priority setting partnership

  1. InitialConditions

    [UK, Organise Network] Open letter: A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform

    There is the opportunity to support this proposal by signing an open letter hosted by Organise Network, here: https://organise.network/actions/petition-a-proposal-for-an-me-cfs-long-c-xWkB_pcn/saf/take-action?utm_source=share&utm_medium=clipboard&utm_campaign=505a358c-8a1d-48ff-b55c-847346df5fe9...
  2. SNT Gatchaman

    Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum, 2024, McDuff et al.

    Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum McDuff, Kiera; Brown, Darren A.; Gross, Douglas P.; Faghy, Mark A.; Davenport, Todd E.; Audette, Jennifer; Bassi, Laura; Bull, Michelle; Cobbing, Saul E.; Décary, Simon; Flynn...
  3. Nightsong

    Four Years in, What Are the Research Priorities for [LC]? A Research Priority-Setting Partnership Between People With..., 2024, Grant et al

    Introduction Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We...
  4. Andy

    Funding: Crohn’s & Colitis UK: research into Crohn’s Disease, Ulcerative Colitis or other Inflammatory Bowel Disease (IBD), closes 29 May 2022

    "Applications are invited for grants to be awarded in 2022 by Crohn’s & Colitis UK. Grants up to a maximum of £100,000 for up to three years are available to fund research into Crohn’s Disease, Ulcerative Colitis or other types of Inflammatory Bowel Disease (IBD). This year, we would like to...
  5. Andy

    Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

    The initial thread for the ME/CFS Priority Setting Partnership is here, UK: Priority Setting Partnership for ME/CFS, but this thread is aimed at allowing discussion of what people might suggest in their individual submissions, and allows for non-UK folks to provide a level of input as well (as...
  6. Andy

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    Dutch researchers involved, what could possibly go wrong.... https://www.york.ac.uk/healthsciences/research/mental-health/projects/mnyes/ The Steering Group (which looks very over-balanced in favour of 'professionals') And their current survey...
  7. Andy

    UK: Priority Setting Partnership for ME/CFS

    [ETA: The published version can be found here, Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al] This being announced/launched today at the CMRC conference, see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and...
  8. Suffolkres

    Top research priorities in healthcare-associated infection in the UK, 2019, Wilson et al.

    Sent to me by very supportive patient advocate for ME and CFS in Norfolk for nearly 40 years Dr Patrick Thompson ! "There is a mismatch between research questions which are considered to be important by patients, carers and healthcare professionals and the research performed in many fields of...
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