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 survivor input. Show all posts
Showing posts with label survivor input. Show all posts

Wednesday, May 4, 2022

Hypothermic therapy device shows promise in treating concussions

WHOM is going to write up and research how hypothermia might help strokes?  Our fucking failures of stroke associations won't do one damn thing. There is no point in even talking to them, they have NO survivor input. Stroke shouldn't even be in their name, they are that useless.

Hypothermic therapy device shows promise in treating concussions

TecTraum Inc. announced complete enrollment status for a clinical trial evaluating its pro2cool device, a noninvasive hypothermic therapy system for treating concussions.

The device, designed to decrease the severity of concussion symptoms, provides localized cooling for the head and neck to lower blood temperature before reaching the brain, the company stated in a press release.

According to the CDC, as many as 3.8 million sports and recreation-related concussions occur annually in the United States. In addition, from 2001 to 2012, emergency room visits doubled among children with concussions.

Following the completion of pilot studies for pro2cool, investigators enrolled 174 participants, aged 12 to 21 years, to further evaluate the device’s efficacy, safety and tolerability. The University of Michigan’s CS Mott Children's Hospital, Akron Children's Hospital, Dayton Children's Hospital and Cincinnati Children’s Hospital Medical Center served as investigational sites.

“As the principal investigator in the study we are thankful for the hard work of the research team from Akron Children’s Hospital,” Joseph A. Congeni, MD, of Akron Children's Hospital, said in the release. “We also appreciate the coordination and communication demonstrated in this study by all of the researchers in this multicenter effort.”

According to the release, hypothermic therapy has been clinically effective in treating various cardiovascular injuries, including cardiac arrest and myocardial infarction. The physiologic neuroprotective benefit from cooling the injured area appears to occur at the cellular level and involves disrupting the body’s inflammatory response. By cooling the region, the cellular metabolic cascade is weakened and subsequent damage caused by the body is minimized.

 

Tuesday, September 22, 2020

National Stroke Quality Improvement Workshop 2020 – Virtual session 1

I'm sure with zero survivor input there will be nothing on how to get to 100% recovery. Useless.

National Stroke Quality Improvement Workshop 2020 – Virtual session 1

Session 1: Healthcare improvement initiatives
Wednesday 21 October 2020, 10 am – 12 pm

Save the date

The Florey Institute of Neuroscience and Mental Health, the Stroke Foundation and Monash University are proud to present the 8th annual National Stroke Quality Improvement Workshop, which will be held as a virtual meeting across two proposed sessions Wednesday 21 October and Wednesday 28 October, with possibly a third workshop on Thursday 29 October.

This year’s National Stroke Quality Improvement Workshop will be in a shorter format with the usual ‘big picture session’ and then concurrent workshops on focussed topics happening on a separate day.

See details of sessions 2, 3 & 4

 

National Stroke Quality Improvement Workshop 2020 – Virtual sessions 2, 3 & 4

I'm sure with zero survivor input there will be nothing on how to get to 100% recovery. Useless.

National Stroke Quality Improvement Workshop 2020 – Virtual sessions 2, 3 & 4

Session 2: Prehospital, emergency and hospital care: reducing inequity of access to acute treatments
Wednesday 28 October 2020, 10 am – 12 pm

Session 3: National Stroke Data Linkage Interest Group
Thursday 29 October 2020, 10–11.30 am

Session 4: Telerehabilitation
Thursday 29 October 2020, 2–3.30 pm

Save the date

The Florey Institute of Neuroscience and Mental Health, the Stroke Foundation and Monash University are proud to present the 8th annual National Stroke Quality Improvement Workshop, which will be held as a virtual meeting across two proposed sessions Wednesday 21 October and Wednesday 28 October, with possibly a third workshop on Thursday 29 October.

This year’s National Stroke Quality Improvement Workshop will be in a shorter format with the usual ‘big picture session’ and then concurrent workshops on focussed topics happening on a separate day.

See details of session 1

 

Wednesday, August 22, 2018

Help Shape the Future of Parkinson's Research

Because we have NO stroke leadership and NO stroke strategy nothing like this will ever occur until survivors are in charge. You, your children and grandchildren are screwed if they have a stroke.I suppose you could ask the presidents of the ASA, NSA and WSO what they are doing but since they have no survivor input that is worthless.
http://view.michaeljfox-email.org/?qs=6a8b5d92c46bac89b2a780a1647e5be32a42b687d1e1c2395838864fabd00853878a67e3a74a5ef73ea18c937cef12c1661757808775f21dee1abffa4151a997dd481a606870d344c7f03b74af4a6968



Last fall, The Michael J. Fox Foundation for Parkinson's Research (MJFF) and 23andMe announced Fox Insight (foxinsight.org) -- a groundbreaking collaboration to build a large, diverse cohort of Parkinson's patients and control volunteers providing researchers with critical insight into the lived experience, genetics and variability of Parkinson's disease.

More than 23,000 participants are now taking part in this online study and helping create the most holistic picture of Parkinson's disease ever assembled. But Fox Insight is just getting started. It is open to anyone 18 or older worldwide, with or without Parkinson's disease, and aims to recruit tens or even hundreds of thousands of patients to contribute data.
Take Part

The more participants who take part, the faster the study could lead to new understanding of disease and potential new treatments.

Fox Insight needs you. Visit foxinsight.org today and be part of amplifying the patient voice in research and care to illuminate potential new pathways to breakthroughs.

P.S. If you're already enrolled in Fox Insight, thank you for sharing your experiences and helping to shape the future of Parkinson's research!
               

This email was sent to oc1dean@gmail.com

This email was sent by:
The Michael J. Fox Foundation
Grand Central Station, P.O. Box 4777
New York, NY 10163-4777
1-800-708-7644

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.1–3 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.

Friday, July 14, 2017

Stroke Recovery and Rehabilitation Roundtable (SRRR)

But without survivor input they are flailing in the dark for what survivors really want. Nothing here sounds like a strategy to get all to 100% recovery. Just generalized crapola statements.
http://journals.sagepub.com/page/wso/srrr
Last year for the first time, a group of the world’s top neurorecovery researchers met at the first Stroke Recovery and Rehabilitation Roundtable to build consensus on how to develop, conduct and report stroke research on the key priority areas of: pre-clinical recovery research, biomarkers of recovery, Intervention development, monitoring and reporting and measurement in clinical trials. 
These recommendations from this timely and much needed roundtable are pivotal for the progression and growth of a unified vision for stroke recovery and rehabilitation research and will provide an impetus for the development of strong international partnerships to tackle this important global challenge to improve stroke recovery.   
A new series of papers relating to this roundtable can be found below:
Moving rehabilitation research forward: Developing consensus statements for rehabilitation and recovery research
Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce
Biomarkers of stroke recovery: Consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable (SRRR)
Improving the development, monitoring and reporting of stroke rehabilitation research: consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable (SRRR)
Enhancing the alignment of the preclinical and clinical stroke recovery research pipeline: Consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable (SRRR) translational working group
Standardised measurement of sensorimotor recovery in stroke trials: consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable (SRRR)