We aim to present an easily understandable version of the latest medical research on MDS

Learn about the latest research projects and use this information to discuss with your consultants or nurses: when you are actively involved in your own care, treatment and support, it can improve your outcomes and experience of the disease.

All the articles listed in this page have been properly vetted for scientific accuracy.

Watch also our Video Interviews with MDS Experts and read more on the MDS Clinical Trials currently recruiting in the UK.

UCART123 – Clinical Trial Open to Recruitment

  1. SUB-TYPE OF MDS:Patients newly diagnosed with CD123 positive adverse genetic risk acute myeloid leukaemia (AML), including patients with CD123 positive AML secondary to MDS
  2. SEVERITY OF MDS: AML
  3. NAME OF DRUG: UCART targeting CD123 positive leukaemia cells
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RFUSIN2-AML1 – Clinical Trial Open to Recruitment

  1. SUB-TYPE OF MDS:Patients AML (acute myeloid leukaemia) who fail to enter morphological remission or have persistence of cytogenetic abnormality following intensive combination chemotherapy at day+100 post-transplant
  2. SEVERITY OF MDS: AML
  3. NAME OF DRUG: Lentivirus Transduced Acute Myeloid Leukaemic Cells (AML) that express
    B7.1 (CD80) and IL-2 (AML cell vaccine)
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Chemotherapy at home: less visits to the hospital and better quality of life

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Janet Hayden – Lead Myeloid Clinical Nurse Specialist – King’s College Hospital MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital. The first one was a report about […]

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ACE-536-MDS-002 (Luspatercept)

  1. SUB-TYPE OF MDS:Lower Risk MDS patients who require red cell transfusions but have not received Erythropoietin
  2. SEVERITY OF MDS: IPSS-R Very Low, Low or Intermediate Risk MDS
  3. NAME OF DRUG: Luspatercept
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Familial/inherited MDS: rare but important to keep in mind

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Prof Jude Fitzgibbon, Prof Tom Vulliamy and Prof Inderjeet Dokal, Queen Mary University of London When a patient is first diagnosed with myelodysplastic syndrome (MDS), one of the most frequent questions posed is whether the disease […]

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Precision medicine is coming to the clinic to treat MDS

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? by Niels Jensen What is precision medicine? In precision medicine the basic idea is to develop a treatment for the specific cancer of individual patients based on a genetic understanding of their disease. Precision medicine has also been […]

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Harmony: a European project with good news for MDS patients

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? The Harmony Alliance is a first-of-its-kind partnership of over 80 private and public organisations aiming at enabling better and faster treatments for patients with blood cancers such as MDS. Patient Organisations have a very active role in Harmony, and […]

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The new generation of MDS diagnostics: the Myeloid Gene Panel

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Report from the MDS Education Forum that took place in November 2018. Interviews by Sophie Wintrich Chief Executive of MDS UK Patient Support Group. What are Myeloid Gene Panels and how are they used in MDS? One of […]

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