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REPAIR-MDS : Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-

All the trials listed on our site have been properly vetted for scientific accuracy. Many thanks to Dr Simone Green – Hull and East Yorkshire Hospitals NHS Trust - for the continuous work in updating the listing.

REPAIR-MDS Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

  1. SUB-TYPE OF MDS: All subtypes of MDS
  2. SEVERITY OF MDS:  Lower-risk MDS
  3. NAME OF DRUG: 
  4. Aims and benefits: REPAIR-MDS seeks to repurpose existing drugs in order to dramatically improve the outlook, health and quality of life of people with MDS. The trial treatments aim to improve the production of healthy functioning blood and immune cells that will fight against infections and boost the immune system's action against the MDS clone.
    REPAIR-MDS design is a is a multicentre open label phase 2 randomised controlled trial which will compare VBaP (sodium valproate, bezafibrate, medroxyprogesterone) with danazol in patients who have received either Erythropoiesis Stimulating Agents (ESAs) and lost response, not responded to ESAs or are deemed unlikely to respond to ESAs.
  5. Primary outcome: Haematological improvement (HI) in each arm and in the trial overall, with 25% or more of the participants having HI in each arm and overall. [ Time Frame: 12 months ]
  6. Secondary outcome:  Reduced burden of red cell and/or platelet transfusion in each arm and in the trial overall, as per the IWG 2018 response criteria. [ Time Frame: 12 months ] Changes in transfusion requirements will be assessed in each participant by comparison with their individual 16-week lead-in baseline as determined by the IWG 2018 haematology response criteria in patients with MDS.
    • Duration of haematological response [ Time Frame: 12 months ]
    • Clinically meaningful haematological responses that persist for 16 weeks or longer.
    • Reported improved Health Related Quality of Life scores in each arm and in the trial overall. [ Time Frame: 12 months ]
    • The four Health Related Quality of Life questions measure
      1. 1 - self-perceived health (excellent, very good, good, fair, or poor)
      2. 2 - number of days out of the past 30 that physical health was not good
      3. 3 - number of days out of the past 30 that mental health was not good,
      4. 4 - number of days out of the past 30 that usual activities were limited by poor physical or mental health of life scores will be evaluated using established protocols.
    • Overall survival

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MDS UK opening times over the Christmas period

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Come to our Christmas Zoom cafe!

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Just a little reminder for you to let your hair down and come along to the Christmas Zoom café social today! (December 13th: 1.30 pm - 3.00 pm)

When: Tuesday 13th December
Time: 1.30pm-3pm
Where: Online via Zoom

 

Please register as soon as you can so we can plan the activities but, in advance, here are some handy hints for attending:

  • Please wear a Christmassy / winter jumper / dress / shirt and/or Christmassy hat
  • Have a pen and paper handy for a short fun quiz
  • Think about introducing yourself with a short, little-known,  fact about yourself!
  • Bring an actual Christmas cracker along for a Christmas cracker screenshot and also share a few Christmas Cracker jokes - the cornier the merrier!
  • Have you got an amusing Christmas story to tell - disasters or triumphs?
  • There will be some singing but all fully-muted - so NOBODY will hear you!

To register just click the red button below and complete the registration page.  (After registering, you'll receive a confirmation email with information about how to join the meeting).

MDS UK Christmas Tree 2022

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