Welcome!

If you have found your way to this website because you were recently enrolled in the National MDS study, welcome and thank you for your involvement in this important study!

Below, please find some details and resources that will hopefully be informative and helpful to your participation. Please check back here for updates on the study.

Next steps:

If this was your first study visit, all the data, specimens and other information that you provided to the study coordinators at your first visit is being sent to the rest of our study team. Once all these materials have been received, a team of pathologists will be reviewing and deciding whether to assign you to one of two study cohorts.

If you are assigned to what we call the "Cross-Sectional" cohort, you will be contacted by the study coordinator at your clinical site who will let you know that no further visits or action is needed for this study - thank you! Additional visits may be required for your standard of care. That information will be communicated to you by the study coordinator.

If you are assigned to the "Longitudinal" cohort, you will be contacted by the study coordinator to begin scheduling you for follow-up visits. These will happen about every six months for as long as you are enrolled on the study. Again, thank you! Additional visits may be required more frequently for your standard of care. That information will be communicated to you by the study coordinator.

You can always reach out to your site study coordinator using the contact information they provided you at their initial visit. Or, you can call the clinic and ask to speak to someone working on The National MDS Study.

What to expect at follow-up visits:

If you are assigned to the “Longitudinal” cohort, follow-up visits will be scheduled approximately every six months. Here is what you can expect at these visits. You can also download this information to print here:

Physical exam: a complete medical and physical examination will be conducted like the one that was done at your first visit.
Medical history: the study team will interview you to learn about any updates to your medical history, or changes to your health that may have happened over the past 6-months. We are interested in things such as new treatments, hospital stays, illnesses, injuries (“adverse events”), and general health complications, among other things.
Blood samples: will be drawn at each visit to perform a complete blood count (CBC) and add to the biorepository.
Bone marrow samples: one of the key components of the study will be collecting samples to be used for current and future research. If your care team decides that a bone marrow biopsy will be helpful for your care and treatment, then one will be performed. This is not a study decision. When these biopsies are completed, the study team will collect a portion of the sample to send the biorepository.
Quality of life interview: another questionnaire will be asked of you to gather some more information that will accompany the samples and other data. This helps future researchers have a fuller picture as they look further into this disease.

Please make sure that all of the required information and samples are collected at each visit! If something is missed, please let the doctor or nurse taking care of you know that these things need to be collected!

FAQ:

(As we receive questions from sites and patients, we will post Reponses here to share).

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Would you like to learn more about MDS? Please visit some of our collaborators below to learn more about the syndrome, treatments and research in the field

The Aplastic Anemia and MDS International Foundation, the world's leading nonprofit health organization dedicated to patients afflicted with bone marrow failure disease. https://www.aamds.org/
MDS Foundation, The Myelodysplastic Syndromes Foundation was established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS. In response to the needs expressed by patients, families, and healthcare professionals, we have established patient advocacy groups, research funding, and professional educational initiatives: https://www.mds-foundation.org/