Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Showing posts with label NINDS. Show all posts
Showing posts with label NINDS. Show all posts

Wednesday, October 22, 2025

Siemens introduces mobile stroke unit at World Stroke Congress

 I don't know they are getting full recovery of 43% because the only statistics I've seen are 10% full recovery from NINDS and the National Stroke Association.

Siemens introduces mobile stroke unit at World Stroke Congress

Siemens Healthineers presented its Mobile Stroke Unit (MSU) at the pre-Congress Meeting of the 17th World Stroke Congress in Barcelona on October 21.

MSU is the first mobile unit capable of diagnosing and treating stroke at the location where it occurs, according to the firm. Operated by a team of specialized neurology professionals, MSU is a specialized ambulance featuring CT, telemedicine, and a point-of-care lab.

Siemens reported that treatment time with MSU is 36 minutes faster, with more than half of the patients treated with the mobile unit achieving full recovery after three months, compared with 43% with conventional care. The use of MSU also resulted in lower mortality rates at 90 days following a stroke, as well as improved functional outcomes for patients.

Siemens Healthineers also presented its interactive virtual reality tool Time is Brain at the meeting. Time is Brain allows users to experience a simulated cerebrovascular accident firsthand and follow through the phases of its management from different perspectives (such as the patient’s or clinician’s). At the meeting, Time is Brain was set for participants to experience the diagnostic and treatment process through the clinician’s perspective.

Wednesday, June 26, 2019

Tulane researcher awarded $2.4 million to study stem cell treatment for stroke

This moon shot is the best use of following the stroke strategy to get everyone 100% recovered? I don't think so.

But I'd rather they tackle known problems first. Like research that stops the 5 causes of the neuronal cascade of death in the first week. Much more likely to succeed. 

This crapola is why stroke survivors need to be in charge. Damn we need stroke leadership and we need it NOW. 

Tulane researcher awarded $2.4 million to study stem cell treatment for stroke

June 26, 2019 10:45 AM
 | 
Tulane Today staff today@tulane.edu
  
Jean-Pyo Lee, PhD, assistant professor of physiology in the Tulane School of Medicine, was recently awarded a five-year, $2.4 million grant from the National Institute of Neurological Disorders and Stroke to study the effectiveness of neural stem cells in treating stroke. (Photo from School of Medicine)

Jean-Pyo Lee, PhD, assistant professor of physiology in the Tulane School of Medicine, was recently awarded a five-year, $2.4 million grant from the National Institute of Neurological Disorders and Stroke to study the use of neural stem cells in treating stroke.
Lee says that stem cell therapy potentially offers great promise in treating stroke, which is a leading cause of death in the United States. The only available drug approved by the U.S. Food and Drug Administration (FDA) for treatment of ischemic stroke (clots) is thrombolytic tissue plasminogen activator (tPA), which dissolves blood clots.
Procedures such as mechanical thrombectomy, during which a surgeon removes a blood clot by inserting a catheter into a blood vessel, restore blood flow but have a greater risk of destabilizing the blood-brain barrier, the vessel network protecting the brain from foreign substances in the blood.
Neural stem cells possess the ability to replace functional neurons and trigger anti-inflammatory actions which could improve recovery from acute stroke injury. Stem cell therapy currently targets stroke rehabilitation by delivering cells during the recovery (not acute) phase. New therapies are needed to lessen stroke’s detrimental effects and quickly facilitate vascular repair.
Lee’s project is aimed at investigating the beneficial role of early administration of stem cells in repairing blood vessels and brain tissue after stroke and improving long-term stroke recovery. To read more about Lee and her work, click here.

Monday, January 22, 2018

Salt Slows Brain Bloodflow in Lab

Is there ANYTHING AT ALL that will get your doctor to create a stroke diet protocol? Or does your doctor just like being incompetent? 

Salt Slows Brain Bloodflow in Lab


NEWS VIDEO + ARTICLE:

A HIGH-SALT-DIET impaired blood flow in the brain, causing dementia-like symptoms in the lab. Can lowering the ingestion of added-salt improve brain-health?




We are often warned of the dangers of high levels of salt in our diet, yet the risks of salt consumption and the effects of salt on the body, including the brain, are not entirely clear. In a new mouse study, scientists link changes in the gut caused by a high-salt diet to impaired blood flow in the brain. This reduced blood flow can eventually lead to impaired cognition that could be reversed by changing back to a normal diet. The study, published in Nature Neuroscience, also provides molecular clues for treating these problems.

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A high-salt diet in mice can increase the number of immune cells releasing IL17 (green), which can negatively affect blood flow in the brain. (Iadecola lab, Weill Cornell Medicine, New York City)
“For years researchers have wondered how a high-salt diet harms the brain,” said Jim Koenig, Ph.D., program director at the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health, which supported the study. “This mouse study provides a detailed cellular and molecular diagram for how the problems start in the gut and opens unexpected paths towards new treatments.”

In this study, mice were fed a high-salt diet (HSD) containing 16 times the amount of sodium chloride typically found in their food. After eight weeks, their brains showed a 20 to 30 percent reduction in blood flow compared to mice that ate normal food. This drop in blood flow was accompanied by the appearance of dementia-like symptoms, including defects in the ability of HSD mice to recognize objects, navigate a maze, and properly build a nest. When the mice were returned to a normal diet, both blood flow and cognition improved, suggesting that the negative effects of excessive salt consumption could be reversible.

“The brain is extremely dependent on getting the right amount of blood at the right time. If blood flow isn’t matched to what the brain needs, things go wrong,” said Costantino Iadecola, M.D., director and chair of the Feil Family Brain and Mind Research Institute at Weill Cornell Medicine in New York City and senior author of this study.

To study further how salt affects blood flow in the brain, blood vessels were taken from the brains of mice fed a high-salt diet and grown in a dish. Normally, these vessels tighten (constrict) to reduce blood flow or relax (dilate) to increase flow. However, those taken from HSD mice did not dilate properly when stimulated to do so. A closer look revealed a reduction in the function of the enzyme eNOS that is responsible for producing nitric oxide (NO), a potent signal for blood vessels to dilate.

When the amino acid L-arginine, which can increase eNOS activity and NO production, was added to the dishes containing blood vessels from HSD mice, the cells responded normally. When L-arginine was injected into HSD mice directly, the defects in cognition were also rescued.

“These findings together show that a high-salt diet affects the activity of the eNOS enzyme, which in turn leads to problems with blood flow and cognition,” said Dr. Iadecola, who is on the strategic advisory board and receives a consulting fee from Broadview Ventures Inc. Broadview Ventures Inc. was created by the board of the Foundation Leducq Trust, the supporting trust of Foundation Leducq, “But the question still remained how the ingestion  of salt could lead to these effects in the brain.”

One clue came from evidence showing that eating high levels of salt changes the immune system of the gut, a finding that was first reported by scientists studying salt’s effects in a model of multiple sclerosis. Specifically, a high-salt diet increased the appearance of TH17 immune cells. These TH17 cells secrete a molecule, IL-17, that can have toxic effects on blood vessels. Because the researchers did not observe any TH17 cells in the brains of HSD mice, they concluded that it must be IL-17, moving throughout the circulatory system, that was acting directly on the brain’s blood vessels.

The combined results of three additional experiments helped to confirm this hypothesis. First, HSD produced no effects in the brains of mice that lacked the gene for IL-17. Second, the effects of HSD could be reversed by treating mice with an antibody that binds up IL-17 and prevents it from affecting blood vessels. Third, effects similar to those produced by HSD were seen in normal mice that were injected directly with IL-17. Together, these findings suggest that it is IL-17, released from cells in the gut in response to a high-salt diet, that acts on the blood vessels in the brain to affect blood flow.

In humans, high levels of salt in the diet has long been associated with high blood pressure, and increasing evidence has linked blood pressure and brain health. However, the blood pressure of HSD mice was not affected, suggesting a very specific and independent mechanism for the changes seen here.

“This study adds to our growing understanding of how the gut can modulate brain function,” said Dr. Koenig. “From a public health perspective, the fact that these effects can be reversed by halting the ingestion of salt is very important and could help us improve health in areas where many people eat a high-salt diet.”

In future experiments, Dr. Iadecola and his colleagues plan to further investigate further how decreased NO production and reduced blood flow leads to changes in cognition.


SOURCE:
This work was supported by the NINDS (NS089323, NS095441), the American Heart Association, and the Fondation Leducq, Paris.

The NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH…Turning Discovery Into Health®

Reference Faraco et al. Dietary salt promotes neurovascular and cognitive dysfunction through a gut-initiated TH17 response. Nature Neuroscience. January 15, 2018. doi: 10.1038/s41593-017-0059-z 

Monday, August 28, 2017

Towards Improved Translational Stroke Research Progress and Perspectives of the Recent National Institute of Neurological Disorders and Stroke Consensus Group Meeting

But they didn't include stroke survivors in the group. With no true experts on stroke involved this group didn't do the best job they could. 
http://stroke.ahajournals.org/content/48/9/2341?etoc=
Charlotte Zerna, Michael D. Hill, Johannes Boltze
See related article, p 2632
Preclinical stroke research faces a substantial transition. Past classical rodent stroke models and study designs revealed numerous potential targets for novel stroke therapies; yet, subsequent clinical stroke trials failed to confirm promising preclinical findings. Pharmacological and mechanical recanalization therapies, representing the only strategies that have substantially improved acute ischemic stroke outcomes, were largely developed omitting conventional preclinical methods.13 In this issue of Stroke, a National Institute of Neurological Disorders and Stroke consensus group comprising leading academic, industry, and Food and Drug Administration (FDA) experts working at the forefront of stroke research has recently published guidelines for improved translational studies.4
Distinguishing between explorative (basic) versus confirmative (translational) studies has been suggested. Exploratory research uses simpler rodent models but a broad spectrum of basic science methods to gain comprehensive information on a putative treatment target. Subsequent confirmative research adopts study designs similar to those used in clinical stroke trials and puts more emphasis on predictive stroke models and study end points using larger and adequate sample sizes for necessary statistical power.5 The group’s recommendations reflect latest developments and concepts in the field, aiming to ultimately enhance the predictive value of preclinical stroke research.

Current Challenges

Key challenges include the choice of end points, homogeneity, utilization of imaging, assessment of important comorbid conditions, and conceptually disentangling the components of neurorecovery. End points in confirmative stroke research need to reflect central clinical safety and efficacy readout parameters rather than intermediate outcomes that are designed to confirm the impact of the therapeutic approach. Because the accepted outcomes after stroke in the clinic are assessed at 90 days, this means including a surveillance period of at least a month after intervention.6 This is important because transient functional improvements after experimental therapy lasting ≤9 weeks have been observed preclinically.7 Shorter observation periods might lead to false-positive or simply incorrect results. Homogeneity of preclinical stroke models, at best marginally representing the broad spectrum of cortical, subcortical, and combined ischemic lesions exhibited by stroke patients, is a key challenge. In acute stroke, the highly dynamic changes in the infarct core and particularly in the penumbra should be understood by preclinical stroke models because the existence and size of the latter became an important criterion to select individuals who might benefit from acute intervention both preclinically and clinically.8,9 Influence of age, sex, and common stroke comorbidities, such has hypertension, diabetes mellitus, or hypocholesteremia, should also be modeled. Potential interactions between a novel stroke treatment and comedications required to treat those comorbidities need to be identified to increase safety and efficacy during the translation process.10 Finally, reliable discrimination between functional compensation and recovery is important because rodents have a higher ability to compensate functional benefits while economic and simple; hence, frequently performed behavioral tests are often insensitive to such masking behavior.11

Recent Milestones and Moving Forward

The evolution of endovascular therapy has produced a consistent true ischemia–reperfusion model in human acute ischemic stroke.12 Failure of translation of over a thousand molecules that were proven to be effective in rodent or small mammal ischemia–reperfusion models may in large part be because of the fact that, in the recent past, human ischemic stroke was a permanent focal ischemia model and not a transient focal ischemic model as believed.2 A fundamental principle of the human endovascular ischemic stroke trials was the identification of a target vessel occlusion and a tissue window for patient selection. The same principle may be used in preclinical stroke research while recognizing possible measurement error of imaging techniques and their matching with actual pathology to an intermediate extent. Future therapies must select subjects in both preclinical and clinical stroke trials on the basis of the tissue window to target the population of interest.
We do not have strong clinical examples of medical or device interventions for neurorecovery yet. However, the components of neurorecovery must be elucidated, and an implied focus on specific types of recovery is needed. Focus on the upper limb, lower limb, kinesthesia, language, and other specific neurological functions will be necessary to understand how the brain and the patient recover. While function is the principle pragmatic outcome, some combination of adaptation, rehabilitation, and true recovery of function will likely occur; each component may respond to specific intervention(s). This can and should be modeled.
Similarly, stroke prevention models are lacking for many types of ischemic stroke. Stroke suffers from causal multiplicity. While much has been learned about atherosclerosis spurred by research on the coronary circulation, the causes of cervical artery dissection, some types of cardioembolism, and lacunar stroke are poorly understood. Modeling stroke prevention by specific cause of stroke is needed.
Finally, in all types of models, and particularly in the confirmative concept of translational research, there is a growing awareness of the need to emulate strong clinical data methods. Double-blind, randomized trials in animal models must be used and powered appropriately to detect key clinical outcomes. Such trials can be multicenter. The impact of big data and open science can help stroke research if we embrace the concepts of widely sharing data and techniques, using public data deposit with standardized data definitions.

Future Solutions and Conclusions

Success of future translational stroke research will not only critically depend on focusing on the most appropriate end points but also on addressing the right patient population. There is a need to think circularly not only from bench to bedside but also from bedside to bench. Confirmative preclinical stroke trials should be designed toward the patient population most likely to be seen in the subsequent clinical trial. Clinical stroke trials must recruit patients who match the characteristics of experimental subjects in the preclinical stroke trial it is based on and only later expand to broader population. When the preclinical and clinical stroke research is consistent, translational success will follow.

Tuesday, July 18, 2017

Standardizing the Structure of Stroke Clinical and Epidemiologic Research Data: The National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) Project

This has only been out there for 5 years so ask your doctor for what your standardized description of your stroke was. You can look at what those Common Data Elements are in the link at the bottom of this post. I didn't have time to make sense of them, but I'm sure your stroke hospital didn't do one damn thing with them.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3493110/
Jeffrey L. Saver, MD, Steven Warach, MD, PhD, Scott Janis, PhD, Joanne Odenkirchen, MPH, Kyra Becker, MD, Oscar Benavente, MD, Joseph Broderick, MD, Alexander W. Dromerick, MD, Pamela Duncan, PhD, Mitchell S. V. Elkind, MD, Karen Johnston, MD, Chelsea S. Kidwell, MD, James F. Meschia, MD, and Lee Schwamm, MD, for the NINDS Stroke Common Data Element Working Group

Abstract

Background and Purpose

The National Institute of Neurological Disorders and Stroke initiated development of stroke-specific Common Data Elements (CDEs) as part of a project to develop data standards for funded clinical research in all fields of neuroscience. Standardizing data elements in translational, clinical and population research in cerebrovascular disease could decrease study start-up time, facilitate data sharing, and promote well-informed clinical practice guidelines.

Methods

A Working Group of diverse experts in cerebrovascular clinical trials, epidemiology, and biostatistics met regularly to develop a set of Stroke CDEs, selecting among, refining, and adding to existing, field-tested data elements from national registries and funded trials and studies. Candidate elements were revised based on comments from leading national and international neurovascular research organizations and the public.

Results

The first iteration of the NINDS stroke-specific CDEs comprises 980 data elements spanning nine content areas: 1) Biospecimens and Biomarkers; 2) Hospital Course and Acute Therapies; 3) Imaging; 4) Laboratory Tests and Vital Signs; 5) Long Term Therapies; 6) Medical History and Prior Health Status; 7) Outcomes and Endpoints; 8) Stroke Presentation; 9) Stroke Types and Subtypes. A CDE website provides uniform names and structures for each element, a data dictionary, and template case report forms (CRFs) using the CDEs.

Conclusion

Stroke-specific CDEs are now available as standardized, scientifically-vetted variable structures to facilitate data collection and data sharing in cerebrovascular patient-oriented research. The CDEs are an evolving resource that will be iteratively improved based on investigator use, new technologies, and emerging concepts and research findings.
The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is “to reduce the burden of neurologic disease.” Supporting translational, clinical, and population research in stroke is fundamental to this mission, as stroke is the single greatest nervous system cause of death and disability, both in the United States and worldwide.(1, 2) (3)
Accordingly, the NINDS supports a diverse array of translational, clinical trial, epidemiologic, and additional patient-oriented research in cerebrovasular disease, which have had a substantial beneficial effect upon health policy, clinical care, and patient outcomes.(4) However, the fullest potential benefit of these research endeavors has not been realized due to the absence of uniform, widely-accepted formats to characterize demographic, disease, care process, and outcome variables. Data elements are often characterized in varying manners in different studies, hampering cross-study comparisons, recognition of population differences, data-sharing, and pooled analyses.
To harmonize data collected across diverse translational, clinical, and population studies, NINDS began the Common Data Element (CDE) Project in 2006.(5) The project aims to standardize naming, definitions, data structure, and response options for all variables commonly employed in NINDS-funded patient and population research. The CDE project complements study-level guidelines from the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) Network.(6) However, where EQUATOR guidelines focus on the reporting of study level results, the CDE Project focuses on the collection and reporting of individual variable level results, providing guidance for data collection, and facilitating data sharing, at a more granular, patient level.
The overall CDE Project has four primary goals: 1) disseminate standards for the collection of data from participants enrolled in studies of neurological diseases; 2) create easily accessible data-collection tools for investigators that are ready to use “off the shelf”; 3) encourage focused and simplified data collection to reduce burden on investigators and practice-based clinicians to increase clinical research participation; and 4) improve study quality and reduce cost of data entry, cleaning and analysis by providing uniform data descriptions and tools across NINDS-funded clinical studies of treatment for neurological diseases.(5, 7) The anticipated benefits of the CDE Project are multiple, and include: 1) rapid and efficient study start-up by allowing investigators access to appropriate data elements, definitions, and case report form templates; 2) improved patient safety by facilitating development of common report templates that can be submitted to oversight committees such as Data and Safety Monitoring Boards (DSMBs); 3) enriched data sharing and data aggregation by employing standard definitions and common forms; and 4) wide adoption of common outcome measures (e.g., functional, cognitive) that may be relevant across the neurological diseases.(5, 7)
The CDE Project first developed a set of General CDEs commonly collected in all neuroscience clinical studies, including demographic information, medical history data, medication use, and data needed for safety reporting.(8) Next, development of disease-specific CDEs was undertaken. This paper describes the process and outcome for the development of Stroke CDEs.

Methods

NINDS convened a Stroke CDE Working Group consisting of 52 experts with experience in NIH-funded cerebrovascular disease clinical and population research or international initiatives in stroke data integration. The Working Group comprised extramural clinical scientists, intramural NINDS researchers, and the NINDS CDE team, supported by a contracted clinical research organization, KAI Research Inc. (Rockville, MD). Participants represented a broad spectrum of specialties and research domains, including: adult and pediatric stroke; acute care and prevention; outpatient, prehospital, emergency department, inpatient, and neurointensive care; neurology, neurosurgery, emergency medicine, radiology, and hematology; nursing, physicians, biostatisticians, public health, and epidemiologists. The input of experienced research coordinators and scientists involved with the creation of data and specimen repositories and of an industry scientist was also solicited. Members from diverse institutions were selected to ensure the inclusion of different perspectives and experience. Specific federal agencies, such as the Food and Drug Administration (FDA) and the Centers for Disease Control (CDC), were requested to appoint representatives. The CRO was responsible for scheduling the Working Group conference calls and working on administrative action items such as development of the CDE data dictionaries based on the Working Group’s content recommendations. Wherever possible efforts were made to harmonize the Stroke CDE work product with existing data structure recommendations, including from the Specialized Program of Translational Research in Acute Ischemic Stroke (SPOTRIAS) Common Clinical Database, the Centers for Disease Control and Prevention’s Paul Coverdell National Acute Stroke Registry (Coverdell), and the American Heart Association/American Stroke Association Get With the Guidelines (GWTG) – Stroke national quality improvement registry.
The final CDE products were to include:
  1. Listing of standardized data elements that can be incorporated into any data system
  2. Data Dictionary with data specifications for each element, including definition, format of response (numeric vs multiple choice vs free text), recommended response options (for multiple choice), explanations, and references
  3. Template study forms in Microsoft WORD and PDF format
  4. Manuals of Procedures (MOPs), as appropriate
  5. Website that facilitates access to the CDE data elements, data dictionary, forms, and MOPS (http://www.commondataelements.ninds.nih.gov/Stroke.aspx).

Wednesday, December 21, 2016

Stroke: Hope Through Research - NINDS report

Pretty much useless, nothing on what strategy they are following to solve all the problems in stroke. Nothing on the 10% full recovery rate and how bad rehabilitation therapies are to only get to 10% full recovery. With thousands of employees I would expect better than this crap.  At a yearly cost of $71 billion to stroke patients it would seem logical to address this by the government. But that won't occur at all. You, your children and grandchildren are fucking screwed if a stroke occurs. A great stroke association president would ensure that NINDS research on stroke provides solutions to all the problems in stroke. At least in the Appendix they do refer to secondary cell death, i.e. the neuronal cascade of death, but still use the bland term neuroprotection elsewhere.
Nowhere in here do they mention that everything in stroke is a fucking failure. No acknowledgement of problems means no one can successfully look for solutions.

Stroke: Hope Through Research - NINDS report


Friday, December 2, 2016

Department of Health and Human Services National Institutes of Health National Institute of Neurological Disorders and Stroke 2017 Fiscal Year Budget Congressional Justification

Because we have NO stroke strategy we can't look at anything here and identify research that will help stroke survivors. Our fucking failures of stroke associations don't have any strategy and won't be doing anything to make sure fundings goes to helpful research. Nothing will get fixed until we destroy the existing associations and replace them with survivor led ones. The main takeaway from this is to ignore the NINDS and get funding from foundations and individual donors. Federal funding can't be counted on.

Saturday, May 21, 2016

Access to Rehabilitation at Six Months Post Stroke: A Profile from the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) Study

This really points out the complete failure of any existing stroke protocols to get survivors to recovery. Which we have known about for years, the NINDS report.- 10% full recovery. Whom is addressing that problem? Certainly not our fucking failures of stroke associations.
This whole study points out the complete lack of stroke leadership and strategy, wrong design, wrong endpoints, wrong problem being addressed.
 http://www.karger.com/Article/Abstract/446080
Hall P.a, b · Williams D.a, b · Hickey A.a · Brewer L.a, b · Mellon L.a · Dolan E.c · Kelly P.J.d · Shelley E.a · Horgan N.F.a · on behalf of the ASPIRE-S study group
aRoyal College of Surgeons in Ireland, bBeaumont Hospital, cConnolly Hospital, Blanchardstown, and dMater University Hospital, Dublin, Ireland

Abstract

Background and Purpose: Stroke is the third(fifth) leading cause of death and disability. Few studies have assessed the profile and adequacy of access to rehabilitation services after ischaemic stroke both in the inpatient and community setting. The objectives of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) study were to assess the disability and rehabilitation profile, adherence with rehabilitation recommendations and needs of patients 6 months following hospital admission for stroke.  
Methods: A rehabilitation prescription was completed before hospital discharge for each participant, and adherence to this prescription was assessed at 6 months to determine whether patients received their recommended rehabilitation needs.  Wrong endpoint, you need to be looking at results.

Results: Two hundred and fifty six patients were recruited to ASPIRE-S. The average age was 69 (SD 12.8). A majority (n = 221, 86%) were referred to the hospital multidisciplinary team, 59% (n = 132) were referred to all services (physiotherapy (PT), occupational therapy (OT), speech and language therapy (SLT)). Fifty-four percent (n = 119) of patients (seen by the multidisciplinary team) were referred for further rehabilitation in the community on discharge. Of these 119 patients, 112 (95%) recalled receiving community rehabilitation services. However, while most (68%) patients were referred for several disciplines (PT, OT, SLT), the most commonly recalled therapy (55%) was from a single discipline. The most commonly recommended frequency of therapy required was on a weekly basis. Sixty-one patients (51%) reported a delay in services, with some still awaiting services at 6 months.  
Conclusion: Results from this prospective study revealed that a significant number of patients (57%) did not receive the therapy recommended on discharge. Future initiatives should include the development of policies, (maybe called stroke protocols?)which support more effective, equitable multidisciplinary rehabilitation for stroke patients in the community.

Saturday, March 5, 2016

Sweeping review of human genome IDs stroke risk genes

It has been two weeks since this came out, Has your doctor contacted you yet? 

Sweeping review of human genome IDs stroke risk genes


Researchers seeking to better understand how our genes contribute to stroke risk have completed what is believed to be the largest and most comprehensive review of the human genome to identify genes that predispose people to ischemic stroke, the cause of approximately 85 percent of all stroke cases.
The research has confirmed the role of the handful of genes previously suspected, ruled out others and identified a new gene that may become a drug target for doctors seeking to prevent this potentially deadly and often debilitating condition.

Massive collaboration

Stroke is the No. 2 killer worldwide, and risk factors such as smoking, high blood pressure, diabetes and high cholesterol are well established. Our genes, however, also play an important role in determining our stroke risk, but relatively little is known about the inheritable risk for ischemic stroke. (Ischemic strokes are caused by blood clots, while other forms of stroke are caused by the rupturing of blood vessels.)
To advance the understanding of ischemic stroke, a massive study has been conducted by researchers with the National Institute of Neurological Disorders and Stroke’s Stroke Genetics Network (SiGN) and the International Stroke Genetics Consortium (ISGC). The project is believed to be roughly twice as large as any previous study investigating the genetic factors contributing to ischemic stroke. The project examined the genomes of tens of thousands of stroke patients and far more control subjects. It represents the work of researchers around the world, including doctors and scientists at the University of Virginia Health System.
internationalcollaboration
The study involved many research sites from around the United States and Europe.
“We have started to alter the mortality from stroke, which is great and exciting,” said Bradford Worrall, MD, a top stroke expert at UVA and a leader of the project. “However, if you look at all the known risk factors, they are fairly poor at predicting an individual’s risk. There’s some statistics that suggest as much as 50 percent of the residual risk is unexplained, which is why understanding the underlying genetic contributors is so important.”

Understanding ischemic stroke

Ischemic stroke actually represents a collection of several different stroke subtypes, including strokes caused by blood clots that form in or near the heart and strokes that result from hardening of the arteries (atherosclerosis) in the head or neck. The new gene identified by the study, for example, is thought to be associated with strokes that result from large artery atherosclerosis.
The study also shed light on the only gene that has been linked to all forms of ischemic stroke. By taking a highly sophisticated approach to the genetic analysis, the researchers were able to show that the gene appears to have the strongest effect in strokes related to small vessel disease. This suggests that each identified stroke gene so far is associated with a specific stroke subtype, the researchers report.
“That shifts the research landscape a little bit in terms of how we investigate that finding going forward,” Worrall said. “We’ll probably need to think about that as both a subtype-specific [risk factor] and – possibly – a general risk factor for stroke.”

Findings published

The findings have been published online by the scientific journal Lancet Neurology. The SiGN study was funded by the National Institutes of Health’s National Institute of Neurological Disorders and Stroke, grant No. U01 NS069208.

Monday, January 25, 2016

The National Institutes of Health StrokeNet

If your hospital is not in here for participating in stroke research ask why the hell not. Call the president. Don't care about keeping up with the latest research? Don't care about helping survivors recover? Just don't care?  Not my job?
http://stroke.ahajournals.org/content/47/2/301.extract?etoc

A User’s Guide

  1. for the National Institutes of Health StrokeNet Investigators
+ Author Affiliations
  1. From the Departments of Neurology and Rehabilitation Medicine and Radiology, University of Cincinnati Neuroscience Institute, University of Cincinnati Academic Health Center, OH (J.P.B.); Department of Public Health Sciences, Medical University of South Carolina, Charleston (Y.Y.P); and the National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD (L.S.J.).
  1. Correspondence to Joseph P. Broderick, MD, Department of Neurology and Rehabilitation Medicine, University of Cincinnati Neuroscience Institute, 260 Stetson St, Suite 2300, PO Box 670525, Cincinnati, OH, 45267. E-mail joseph.broderick@uc.edu
Key Words:
See related article, p 304.
The National Institute of Neurological Disorders and Stroke (NINDS) established the National Institutes of Health (NIH) StrokeNet to facilitate the rapid initiation and efficient implementation of small and large multisite exploratory and confirmatory clinical trials focused on promising interventions for stroke prevention, treatment, and recovery, as well as validation studies of biomarkers or outcome measures. The network is open to execute high-effect trial ideas that can come from any corner of the wide stroke community. This network, which was initiated in the Fall of 2013, currently involves 288 hospitals across the United States and is designed to serve as the infrastructure and pipeline for new potential treatments for patients with stroke and those at risk of stroke. NIH StrokeNet also provides a tremendous educational platform for stroke physicians and other healthcare professionals, particularly those individuals in training and focused on an academic career. To maximize the effect of NIH StrokeNet, it is important for the larger stroke community to know its structure and the process and timeline by which stroke trials are developed and implemented. For more detailed information on the NIH StrokeNet, its ongoing trials, and educational webinars, one can visit the website https://www.nihstrokenet.org/.

Friday, June 12, 2015

DARPA’s Humanoid Robots Take a Slow-Motion Leap Forward

I'm not that interested in the robots even though they are cool. I'm interested in The Challenge. Which is something a great stroke association would do to get solutions to all the problems in stroke.
Or we could have the NINDS put this challenge out;

Stroke goals in 10 years


ASA, NSA, WSO; Are you all f*cking afraid of doing something like this? Which might make you obsolete? A stroke survivor would gladly run the organization to make itself obsolete.
https://www.yahoo.com/tech/darpas-humanoid-robots-take-a-slow-motion-leap-121243370784.html
So DARPA did what DARPA does best: It offered a Challenge, open to anyone daring enough to enter — universities, companies, or individuals. It offered $3.5 million in prizes to teams who could successfully complete eight tasks in a simulated power-plant rescue scenario:
1. Drive a vehicle to the plant, stop and park; 
2. Get out of the car; 
3. Walk to the plant’s doorway, open its human-sized handle, and walk through; 
4. Turn a valve handle one full rotation; 
5. Pick up a power drill, turn it on, and cut a hole out of a sheetrock wall big enough for a person to escape; 
6. Climb over (or push aside) a room full of rubble;
7. Exit by climbing a metal staircase; and
8. A surprise task.

Friday, January 30, 2015

New members selected for National Advisory Neurological Disorders and Stroke Council

If you know these people ask them which problems in stroke are going to be their focus. And what is the strategy to address all these problems.
http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_nands_council_01292015.htm
Five prominent individuals from the neuroscience community have joined the National Advisory Neurological Disorders and Stroke Council, the principal advisory body to the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health.
The council, which includes scientists, physicians and public representatives, meets three times each year to review scientific applications and to advise the institute’s leadership on activities and policies affecting research programs.
“We are pleased to welcome these individuals to the NINDS’ council. Their extensive experience and diverse backgrounds will enrich the NINDS’ work to advance basic, translational and clinical research in the neurosciences,” said NINDS Acting Director Walter Koroshetz, M.D.
Brief biographies of the new council members are below.
Amy Brooks-Kayal, M.D., is a professor in the Departments of Pediatrics and Neurology at the University of Colorado, School of Medicine, Aurora, and in the Department of Pharmaceutical Sciences, Skaggs School of Pharmacy and Pharmaceutical Sciences, San Diego. She is also chief and Ponzio Family Chair in Pediatric Neurology at the Children’s Hospital Colorado in Denver. Dr. Brooks-Kayal is internationally recognized for her research in the mechanisms of and new therapies for epilepsy and her expertise in clinical care for people with epilepsy. She is a member of the board of directors and incoming president of the American Epilepsy Society. She earned her M.D. from Johns Hopkins University, Baltimore, and completed residencies in pediatrics and child neurology at Children’s Hospital in Philadelphia.
Karen S. Chen, Ph.D., is the chief scientific officer and chief operating officer of the Spinal Muscular Atrophy (SMA) Foundation in New York City. She is responsible for overseeing the full range of scientific and drug discovery programs, as well as managing the activities at the SMA Foundation. Dr. Chen has more than 25 years of experience planning, directing, and conducting preclinical research as a senior research scientist and manager.  She has headed a variety of departments and groups working on the discovery and development of novel therapeutics for neurological disorders. Prior to joining the SMA Foundation, Dr. Chen worked at Roche and Elan Pharmaceuticals, where she focused on therapy development for Alzheimer’s and Parkinson’s diseases. She earned her Ph.D. in neurosciences at the University of California, San Diego.
Timothy Coetzee, Ph.D., is the chief advocacy, services and research officer at the National Multiple Sclerosis Society (NMMS) in New York. Dr. Coetzee has been engaged in multiple sclerosis advocacy work throughout his career. He leads the society’s federal and state activism programs and manages its investment in basic, clinical and commercial research. He has also helped launch and served as president of Fast Forward, an initiative of the NMMS to speed the commercial development of new treatments for multiple sclerosis. He earned his Ph.D. at Albany Medical College in New York.
Beverly L. Davidson, Ph.D., is the director of the Center for Cellular and Molecular Therapeutics and holds the Arthur V. Meigs Chair in Pediatrics at the Children’s Hospital of Philadelphia. She is also a professor in the Department of Pathology and Laboratory Medicine at the Perelman School of Medicine at the University of Pennsylvania. Prior to her move to the Keystone State, Dr. Davidson was the Roy J. Carver Chair in Biomedical Research at the University of Iowa Carver College of Medicine, Iowa City, and vice chair for research in internal medicine. Her research focuses on inherited brain disorders and the development of novel therapies. She has received numerous awards including a University of Iowa Carver Research Program of Excellence. In 2014, she served on the first Blue Ribbon Panel to review the NINDS Intramural Research Program. She earned her Ph.D. in biological chemistry from the University of Michigan in Ann Arbor.
S. Lawrence Zipursky, Ph.D., is a professor in the Department of Biological Chemistry at the University of California, Los Angeles, David Geffen School of Medicine. He is also an investigator for the Howard Hughes Medical Institute. As a developmental neurobiologist, Dr. Zipursky researches the cellular rules and underlying molecular mechanisms by which neurons establish specific patterns of synaptic connections during development. Dr. Zipursky is a member of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative Multi-Council Working Group. He has received numerous honors including election to the National Academy of Sciences. Dr. Zipursky earned his M.Sc. and Ph.D. degrees in molecular biology from Albert Einstein College of Medicine in New York City.
###
NINDS (http://www.ninds.nih.gov) is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.

Thursday, June 19, 2014

U of M joins national stroke research project

We as survivors need to get completely involved in StrokeNet because if this is left up to researchers and doctors they will completely fail in following a strategic plan just like they've been failing for the past 40 years.
http://bringmethenews.com/2014/06/18/u-of-m-joins-national-stroke-research-project/
The idea behind StrokeNet is to allow institutions to share the information and data they collect to speed up research and cut costs.
“The new system is intended to streamline stroke research, by centralizing approval and review, lessening time and costs of clinical trials, and assembling a comprehensive data sharing system,” says Dr. Petra Kaufmann, associate director for clinical research at the National Institute of Neurological Disorders and Stroke.
The NIH reports the 25 research centers are strategically placed in every region of the country, and were selected because of demonstrated experience in stroke research and recruitment, including the ability to enroll underrepresented populations.
The University of Minnesota was selected because of its reputation of academic excellence, dedication to research and advancement of medical knowledge, the U reports.

More at link.
I would suggest contacting  Dr. Petra Kaufmann at NINDS to get involved.
Petra.kaufman@nih.gov


Wednesday, December 25, 2013

ANN ARBOR: Michigan hospitals form new network to help revolutionize stroke clinical research

Instead of just suggesting what others can do I'll have to actually do something myself here. Making sure they actually know what they are doing.
http://www.heritage.com/articles/2013/12/25/ann_arbor_journal/news/doc52b84bf9e7fc6439175394.txt
Nine hospitals in southeast Michigan have come together to form one of 25 regional stroke networks across the nation that will allow teams of researchers representing every medical specialty needed for stroke care to address the three prongs of stroke research: prevention, treatment and recovery.

The new Michigan StrokeNet and its counterpart networks were announced Dec. 13 by the National Institutes of Health. It is the only network in Michigan, and will seek to add additional Michigan hospitals over time.

Michigan StrokeNet will be coordinated by the University of Michigan Health System’s Stroke Program, and involves two U-M Health System hospitals, two from the Trinity Health system and five Detroit Medical Center hospitals. Dr. Philip Scott and Dr. Devin Brown of U-M’s Department of Emergency Medicine and Department of Neurology will serve as co-principal investigators.

“The new system is intended to streamline stroke research, by centralizing approval and review, lessening time and costs of clinical trials, and assembling a comprehensive data sharing system,” said Dr. Petra Kaufmann, the associate director for clinical research at the National Institute of Neurological Disorders and Stroke (NINDS).

NINDS, which will fund and manage the NIH Stroke Trials Network, or NIH StrokeNet, has a strong history of successful stroke clinical trials over the past 40 years, leading to some astonishing advances in treatment and prevention of the disease, including the first treatment for acute stroke, announced in 1995.

The 25 networks are strategically placed in every region of the country. All have experience in stroke research and recruitment, including the ability to enroll underrepresented populations, and were required to offer access to the full cadre of specialties that are involved in stroke care. These include:  emergency medicine, neurosurgery, interventional neuroradiology, vascular neurology, neurointensive care, neuroimaging, stroke rehabilitation and pediatric neurology. Each network will receive infrastructure funding for research and education support, with $50,000 per year allocated to train the next generation of  stroke clinical researchers.

U-M is already the home of the national clinical coordinating center of the NIH-funded Neurological Emergencies Treatment Trials network, which coordinates studies on the emergency care of a range of brain-related issues.

 The nine participants in Michigan StrokeNet are:

— University Hospital (U-M Health System), Ann Arbor

— Saint Joseph Mercy Health System, Ann Arbor
— Saint Mary Mercy, Livonia

— DMC Detroit Receiving Hospital, Detroit

— DMC Sinai-Grace Hospital, Detroit

— DMC Harper University Hospital, Detroit

— DMC Rehabilitation Institute of Michigan, Detroit

— DMC Children’s Hospital of Michigan, Detroit

— C.S. Mott Children’s Hospital (U-M Health System), Ann Arbor

The University of Cincinnati will manage the national clinical coordinating center, which will oversee and coordinate the institutional review board and master trial agreements for all of the regional centers. NIH will announce the award of a national data management center in February.

NIH StrokeNet investigators, working with the broader stroke community, will propose, develop and conduct stroke protocols to be administered within the network and train the future generation of clinical researchers in stroke.

Historically, the model for stroke clinical trials was to complete large teams of personnel and infrastructure, which were then disassembled once the trial was completed.  This led to delays in patient recruitment and additional costs when new trials were initiated, with some stroke clinical trials lasting many years longer than anticipated and costing millions of dollars more than the original estimate.
In a 2013 article in Stroke, Story Landis, NINDS director, and co-author Dr. Marc Fisher wrote: “Because our ultimate goal is to test and compare therapies that will have a real impact on patient health, a coordinated and long range approach to solving challenges in stroke trial research is sorely needed.”

The network concept evolved from an NINDS planning effort in which stroke experts were asked what is most needed to reduce death and disability due to stroke in the United States. They called for a nationwide stroke network that would allow for a more seamless transition between early safety and efficacy trials and Phase II and III clinical trials.

“NIH StrokeNet will allow the most promising therapies to quickly advance to the clinic, to improve prevention, acute treatment, or rehabilitation of the stroke patient,” said Dr. Walter J. Koroshetz, NINDS deputy director. “We need to have a balance of approaches to decrease the burden of illness due to stroke.”

“Our goal for the NIH Stroke Centers Network is to initiate four to five NINDS-funded exploratory Phase I and II stroke clinical trials, and two to four Phase III trials over the next five years. This is a major challenge which we believe the stroke research community will embrace,” said Dr. Scott Janis, NINDS program director of the NIH StrokeNet.              

Monday, August 19, 2013

congressional member organizations (CMOs) for stroke

This came from an email from the NSA but they didn't say what to tell your congressperson(A National Stroke Plan would be great).  Stroke medical stuff is totally broken. Ask the NINDS to convene a session for survivors(excluding the ASA and NSA as unproductive) and come up with a strategy to address reducing stroke disabilities.  Similar to National Alzheimer’s Plan Released

The suggested content of your communication, boring, boring, boring.
Join stroke-related CMOs
Dear [Representative/Senator],
Congress is considering a range of policies critical to stroke survivors. These include bills to ensure access to post-stroke therapy services under Medicare; improve the federal partnership with survivors on return-to-work challenges; and continue our nation's commitment to stroke-related medical research activities. To ensure that you and your staff are well-informed on these and other stroke-related issues, I urge you to join congressional member organizations (CMOs) designed to provide the latest updates on these policy debates, specifically the:

House Congressional Neuroscience Caucus, co-chaired by Rep. Earl Blumenauer (D-OR) [contact at 225-4811] and Rep. Cathy McMorris-Rodgers (R-WA) [contact at 225-2006];

House/Senate Congressional Heart and Stroke Coalition, chaired by Rep. Lois Capps (D-CA) [contact at 225-3601], Rep. Chris Smith (R-NJ) [contact at 225-3765], Sen. Mike Crapo (R-ID) [contact at 224-6142], and Sen. Richard Durbin (D-IL) [contact at 224-2152]; or

House Congressional Brain Injury Task Force, co-chaired by Rep. Bill Pascrell (D-NJ) [contact at 225-5751] and Rep. Tom Rooney (R-FL) [contact at 225-5792].

These CMOs seek to highlight the enormous human and financial impacts of stroke across our nation. From a budget perspective, the estimated direct and indirect cost of stroke was $73.7 billion in 2010. But clearly the human cost is more important. Someone in the U.S. has a stroke roughly every 40 seconds. About 795,000 people will have a stroke this year. It's the fourth leading cause of death and a leading cause of long-term disability.

Joining these bipartisan groups offers an opportunity for you to help improve the federal partnership with stroke survivors, caregivers and their families and offer a ray of hope to me and other constituents like me who have been impacted by stroke. To join one of these CMOs, simply call one of the co-chairs noted above and ask for the staff person managing the group. I appreciate your consideration and hope I can count on you to prioritize stroke-related issues.
Thank you,
[Your Name]
[Your Address]
[City, State ZIP]

Sunday, June 9, 2013

Thrombolysis (tissue plasminogen activator) in stroke: a medicolegal quagmire.

This whole thing just proves how necessary it is to find a replacement or better way of delivering tPA, maybe magnetically directed nanoparticles, that would only require a small bolus. That would never do, to listen to a non-medical person suggestion. And objective diagnosis of stroke.
How silly of me to expect someone with some analytical brains to see all the problems in stroke care.
https://www.uic.edu/com/ferne/pdf/ieme_2006/tpa/tpa_weintraub_tpa_medicolegal_2006.pdf
Background and Purpose—Despite the success of the 1995 National Institutes of Neurological Disorders and Stroke
(NINDS) study using IV recombinant tissue plasminogen activator (tPA) within 3 hours in acute stroke and its
subsequent FDA approval, there has been a reluctance to use tPA because of safety and efficacy issues with high
incidence of intracerebral hemorrhage, and protocol violations.
Summary of Review—The following cases will illustrate the increased number of malpractice lawsuits generated by the
controversy of “standard of care” and illustrate and educate clinicians regarding specific issues and how to avoid: (A)
Failure to use tPA (loss of chance) or to transfer, Reed versus Granbury Hospital (Texas): acute stroke victim taken to
local hospital with tPA available only for cardiology. Wife subsequently transferred patient to nearby stroke center but
no tPA given. Defendant verdict; (B) Stroke misdiagnosis (failure to diagnose, loss of chance), Mei versus Kaiser
Permanente South (San Francisco, CA): acute stroke while driving with ambulance taking to local hospital. Symptoms
were misdiagnosed and neurologist did not see her for 6 hours. Plaintiff verdict; (C) Bleeding complications of
therapy/failure of informed consent, Harris versus Oak Valley Hospital (California): acute stroke and hypertension
treated with tPA with subsequent development of intracerebral hemorrhage. Patient alleged that tPA should not have
been given. Defense verdict; (D) Expert witness testimony, Wojcicki versus Caragher (Massachusetts): a prominent
neurologist gave “false and misleading testimony” and the Court found that the neurologist perpetrated a “fraud on the
Court” intentionally and deliberately misleading the Court and jury. Court sanctioned the neurologist $88 685; Ensink
versus Mecosta County General Hospital (Michigan): neurological testimony (plaintiff expert) regarding potential
benefit of using tPA during last available 1 hour of window was felt to be “speculative”. Defendant verdict.
Conclusions—Neurologists, emergency room physicians and hospitals are at increased liability risk if they use or do not
use tPA. Detailed documentation,

Monday, April 22, 2013

Why the United States Needs a Network for Stroke Clinical Trials

One of the authors - Story - is director of the NINDS. Another failure of the existing stroke associations, they should be providing such support.
http://stroke.ahajournals.org/content/44/5/1217.extract.html?etoc

Introduction

Stroke is the fourth leading cause of death in the United States, and it is a major cause of long-term disability and reduced quality of life for hundreds of thousands of Americans. Over the past decades, teams of National Institute of Neurological Disorders and Stroke (NINDS)–funded clinical trialists have consistently made major contributions toward treating stroke acutely, enhancing its prevention and rehabilitation, and thereby improving the health of the country. However, although stroke research has resulted in improved outcomes, the increasing incidence with aging of the population and substantial disability and mortality associated with stroke remain a significant burden for a growing number of stroke patients each year. At the recent NINDS stroke planning meeting, external clinicians and researchers identified that enhancing clinical trial infrastructure is one of the highest priorities for the Institute to address in its effort to advance stroke care in the United States.1

Recognizing the Challenges of Clinical Research

The NINDS typically funds between 20 and 50 phase II and III stroke trials, investing between $30 and $70 million per year. Trials are generally funded in response to investigator-initiated research proposals that are judged to be highly meritorious by a special clinical research peer review committee. Before accepting trial grants for peer review, the NINDS leadership evaluates proposals for their potential to reduce the burden of illness caused by stroke. The trials are performed by large teams self-assembled around single projects that are championed by a principal investigator and a cadre of hard-working co-investigators. However, the execution of trials requires the work of hundreds. Traditionally, necessary personnel and infrastructure are assembled anew for each trial once a grant receives funding. Trial infrastructure is then disassembled once the trial is completed. Protracted negotiations over protocols and trial agreements delay study start-up, increasing costs. In addition to the inherent inefficiency of time and resources involved in duplication of infrastructure for each trial, the current system makes it difficult to continuously improve methods or infrastructure based on lessons learned.

Saturday, January 5, 2013

Sen. Kirk's stroke offers him new Medicaid perspective

If you are one of his constituents, you need to have him sponsor a national Stroke Plan, it can be copied directly from the National Alzheimers' Plan.
He also needs to be educated on the need for NINDS funding to find hyperacute therapies that  prevent a lot of the disability. Tell him he can become the Tipping Point for Stroke.  I never heard anything after Senator Tim Johnson from South  Dakota had his stroke so he let his opportunity to be a stroke spokesperson slip thru his fingers.
http://www.news-medical.net/news/20130104/Sen-Kirks-stroke-offers-him-new-Medicaid-perspective.aspx
Sen. Mark Kirk's stroke has awakened him to what people on Medicaid experience in their rehabilitation efforts, he said.
The Hill: Sen. Kirk Says Stroke Changed Perspective On Medicaid
Sen. Mark Kirk (R-Ill.) said his debilitating stroke has sparked a new interest in the experience of people on Medicaid. In an interview published Wednesday, Kirk said that most Illinois residents insured through the low-income health program would be eligible for just 11 rehabilitation sessions following a stroke. "Had I been limited to that I would have had no chance to recover like I did. So unlike before suffering the stroke, I'm much more focused on Medicaid and what my fellow citizens face," Kirk told the Chicago Sun Times (Vibeck, 1/2).

Monday, March 26, 2012

Top SPRG priorities for future NINDS stroke rehabilitation research

I couldn't tell if they had any stroke survivors on the group. They really should have just said that stroke rehabilitation research has failed and work more on preventing the neuronal cascade of death.
http://www.news-medical.net/news/20120326/Top-SPRG-priorities-for-future-NINDS-stroke-rehabilitation-research.aspx
In 2011, the National Institute of Neurological Disorders and Stroke (NINDS) convened the Stroke Progress Review Group (SPRG) to conduct a final 10-year review of the state of stroke research. The goal is to set priorities and shape future NINDS programs and policies. While SPRG found much available data for maximizing stroke rehabilitation outcomes, translation to clinical practice is inadequate. To realize the enormous potential for improving rehabilitation and recovery, more resources should be applied to implementing and directly supporting SPRG's recommendations. The Final Report of the Stroke PRG is on the NINDS SPRG website: http://www.ninds.nih.gov/find_people/groups/stroke_prg/01-2012-stroke-prg-report.htm.
The working group for rehabilitation and recovery was co-chaired by Anna Barrett, MD, director of Stroke Rehabilitation Research at Kessler Foundation, Pamela Duncan, PT, PhD, Duke Center for Clinical Health Policy Research, with Steven C. Cramer, MD (NINDS liaison co-chair). "The strategic plan and vision set out in the 2002 SPRG was intended for ten-year implementation," said Dr. Barrett. "To assess progress in rehabilitation and recovery, we recruited eleven working group members (John Chae, Leonardo Cohen, Bruce Crosson, Leigh Hochberg, Rebecca Ichord, Albert Lo, Randy Nudo, Randall Robey, R. Jarrett Rushmore, Sean Savitz, and Robert Teasell with assistance from Norine Foley)."
The working group found significant advances at ten-year followup. "Not only have we addressed the original SPRG priorities (eg, improving stroke deficits, rather than advising compensatory management), noted Dr Barrett, "we have pushed the science of rehabilitation much further forward. For example, the report cites NIH-funded work done at Kessler Foundation using optical prism training to rehabilitate hidden disabilities of functional vision after right brain stroke. This concept of targeting any treatment to a specific brain system had not yet been funded by the NIH ten years ago. Now we need to apply these strategies over large patient groups, since the number of US stroke survivors continues to rise."
Three priorities were identified:
  1. Need for studies identifying valid, reliable, affordable, and accessible measurements of neuroplasticity. We need to understand how these measures of brain plasticity can be used to guide and individualize rehabilitation/restorative therapies to achieve optimal outcomes among all persons affected by stroke.(So do we have good or evil neurons that create neuroplasticity?)
  2. Substantial data suggest that brain plasticity after stroke is shaped by experience. We need to determine which experiences are most important, what dose of experience is needed to maximize outcomes, and how to measure these experiences. An improved understanding of biomarkers of recovery and restorative therapies will support achieving these goals.
  3. Advances in basic science of brain repair indicate a major opportunity for translating new restorative therapies to address post-stroke disability. Delivery of appropriate treatment requires a team effort, from bench to bedside to health policy reform. Implementation of Specialized Programs of Translational Stroke Research in Recovery (SPOTS-R2) is a priority.
"This report and the top 3 priorities will form a crucial component of the second phase of our stroke planning process where we will identify the highest priority research goals in each of the major areas of stroke prevention, treatment and recovery," commented NINDS director Story Landis, PhD.

Tuesday, March 13, 2012

It's Time For NIH To Expand Its Focus Beyond Cancer

If we are going to change this we will need to contact the NIH. Its quite distressing that no stroke organization was quoted. Statistics should have been easily available.
http://www.forbes.com/sites/johnlamattina/2012/03/13/should-the-nih-adjust-its-funding-priorities/

The National Institutes of Health (NIH) is not a single institution but is made up of over 20 centers, including the National Cancer Institute (NCI), the National Institute of Mental Health (NIMH), and the National Human Genome Research Institute. Its stated mission is: “To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.” The work both performed and supported by the NIH provides the seeds for understanding the basic cause of diseases. This basic research is the starting point for the majority of projects tackled by the biopharmaceutical industry. In effect, the NIH funding lays the foundation for the drugs that will be discovered over the next 20 years. Therefore, when a large discrepancy exists in the NIH’s funding priorities, it’s concerning.

In reading the 2013 proposed budget for the NIH, as reported in a Chemical & Engineering News, I was surprised to see how dominant the NCI is in terms of funding. It is the clear leader at almost $5.1 billion, dwarfing the $1.6 billion budgets of the National Institute of Diabetes & Digestive & Kidney Disease (NIDDK) and the National Institute of Neurological Disorders and Stroke (NINDS). The work the NCI does is crucial in advancing how to treat and ultimately cure this horrible disease. In fact, the work that the NCI has supported over the last four decades has spawned many new treatments for lung cancer, kidney cancer, melanoma, etc. Furthermore, it is estimated that over 1,000 potential new medicines are in clinical trials around the world to treat various forms of cancer. Many of these experimental medicines were initially pursued based on insights generated by research funded by the NCI. Not all of these will become marketed drugs, but anywhere from 100 – 300 may. If that is correct, we will reach a point, perhaps in our lifetime, when cancer is not a death sentence but a manageable disease.

Let’s contrast this with the state we are in with other diseases. According to the Alzheimer’s Association, there are 5.4 million Americans with Alzheimer’s Disease (AD); by 2050, that number will triple. Today, the cost of treating AD is about $180 billion annually. By 2050, these costs will have devastating effects on the economy unless some medical advances can be made. Currently, there are no therapies available that can arrest or reverse AD; current drugs like donepezil only slow the onset. There are some interesting new compounds in late stage clinical trials, but there is no guarantee that they will be effective. There is no doubt that more fundamental research is needed in AD. Yet, the NINDS budget of $1.6 billion is meant not just for support of AD research but also to research in stroke, multiple sclerosis, Parkinson’s disease, and epilepsy.

A similar story can be told in the area of psychiatric disorders, such as schizophrenia, depression, post traumatic stress disorder and anxiety. Unfortunately, most of the major pharmaceutical companies are dropping out of this research. One of the reasons is that, despite the deficiencies of current treatments, there are no new biological targets to pursue that could lead to improved therapy. Ironically, Congress declared that the 1990s were to be the “Decade of the Brain.” Unfortunately, this proclamation didn’t stir a major boon in R&D in this field. Basic research is needed in psychiatric disorders to help in the discovery of new medicines in this area, and the NIMH could be a big help here.

A case could be made for any number of other major areas in need of increased funding. We are in the midst of a major obesity epidemic which is leading to a parallel increase in Type 2 diabetes. New drugs are needed to treat infections that are becoming resistant to current anti-infective agents. Heart disease is still a major killer. All of these areas can benefit from greater funding. Perhaps now is the time to revisit NIH funding priorities and shift funds from the NCI to other Institutes. I am not advocating slashing the NCI’s budget by half. However, would a redistribution of NCI funds to other Institutes be totally unreasonable in light of other needs? I believe the NCI should continue to be the NIH’s top funding priority, but I also believe it is time to add resources to fight other diseases. Not doing so is shortsighted and neglects to address epidemics that we can confidently predict are in the not-so-distant future.

I fully appreciate the importance of cancer research. I also realize that this is not a single disease, but one with multiple causes and one where patients will require more than one medicine to survive. I have a personal commitment to fighting this disease in my work with the Terri Brodeur Breast Cancer Foundation – work that is a priority for me. However, reducing the NCI budget by $500 million and redistributing this money to fight AD and diabetes might be more beneficial to overall healthcare in the U.S. At a time of tight budgets with no possibilities for increases in the near future, along with the enormous costs that other diseases are going to place on our healthcare system in the next decade, I believe that the NIH needs to revisit its funding priorities.