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.

Saturday, March 18, 2023

The International Stroke Recovery and Rehabilitation Alliance

 


 The complete stroke medical world is a total fucking failure! At least survivors in charge would have a vision for 100% recovery; not this crapola! And yes these are all famous stroke researchers but they are not solving stroke at all!

The International Stroke Recovery and Rehabilitation Alliance

The global burden of disability after stroke is increasing despite therapeutic advances. One in four adults will have a stroke and about 63% of these events will occur in people younger than 70 years of age. Increasing access to effective rehabilitation(Survivors want effective recovery! Not just access to ineffective rehab!) is a global health priority, particularly in low-income and middle-income countries. Optimising recovery requires both new, biologically informed treatment approaches and enhanced (high-dose and high-quality) delivery of training-based treatments. Patient-centred research priority setting exercises can highlight knowledge gaps. Advances have been difficult to achieve because stroke recovery and rehabilitation practice is complex, with multiple interacting domains (eg, motor, language, and cognitive), disability levels (impairment, activity, and participation), and individuals involved (eg, patient, family members, and multidisciplinary team). Our shared vision is a world where global collaboration brings breakthroughs for people living with stroke. Succeeding will require highly coordinated research efforts by international, interdisciplinary teams.
The Stroke Recovery and Rehabilitation Roundtable, created in 2016, built consensus and aligned efforts for improvements in research and practice. Our approach identified priority areas and led to the creation of international, interdisciplinary, expert task forces that—together with junior faculty—worked to identify consensus objectives. Our first recommendations were reported in a position paper and we have continued to provide expert guidance on research methods, research targets, and clinical practice. The need to transition from being a recommendation group to being an action group for stroke recovery and rehabilitation became clear and, in 2020, we endorsed the International Stroke Recovery and Rehabilitation Alliance (ISRRA).
The greatest impact on the burden of disability after stroke will come through building research partnerships that include people with lived experience of stroke.(I see no examples of this.) Our aim is to establish topic-specific, strategic working groups, overseen by our Scientific Committee. Diverse in scope, the aims of current groups include building the economic case for rehabilitation and creating criteria for Centres of Clinical Excellence. Task forces on exercise and frailty are recent additions. Building impactful research projects both in high-income countries and in low-income and middle-income countries is a top priority. Our approach creates a dynamic Alliance that will focus on achieving our vision.
Our membership includes a full array of clinicians and researchers with an interest in recovery after stroke, from acute stroke physicians to basic scientists, from 36 countries. ISRRA is open to all, and our work has just begun.
We thank the many individuals who have contributed to the work of past Stroke Recovery and Rehabilitation Roundtables and to the building of the strategy and work plans for the Alliance to date. Our work is sponsored by the National Health and Medical Research Council (NHMRC; Australia) Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery (APP 1077898), the Canadian Partnership for Stroke Recovery, NHMRC (Australia) Centre of Research Excellence in Stroke Trials (APP 2015705), Moleac, and Ipsen.

References

  1. 1.
    • Wafa HA
    • Wolfe CDA
    • Emmett E
    • Roth GA
    • Johnson CO
    • Wang Y
    Burden of stroke in Europe: thirty-year projections of incidence, prevalence, deaths, and disability-adjusted life years.
    Stroke. 2020; 51: 2418-2427
  2. 2.
    • Gimigliano F
    • Negrini S
    The World Health Organization “Rehabilitation 2030: a call for action”.
    Eur J Phys Rehabil Med. 2017; 53: 155-168
  3. 3.
    • Leitch S
    • Logan M
    • Beishon L
    • Quinn TJ
    International research priority setting exercises in stroke: a systematic review.
    Int J Stroke. 2023; 18: 133-143
  4. 4.
    • Bernhardt J
    • Hayward KS
    • Kwakkel G
    • et al.
    Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce.
    Int J Stroke. 2017; 12: 444-450

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