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Protocol No. NHLBI-MDS
Principal Investigator Mattison, Ryan
Age Group Adult
Sponsor Type Externally Peer-Reviewed; National
Title The National Myelodysplatic Syndromes (MDS) Study
Objective The purpose of this research study is to investigate how your disease changes over time which may allow doctors to better understand how to prevent, detect and/or treat Myelodysplastic Syndrome (MDS).
Treatment Samples of blood, bone marrow, hair follicle tissues and cells from the inside of your cheek will be collected. You will also be asked to complete questionnaires at 6 and 12 months after the start of the study and then every year. The questionnaires take approximately 20-25 minutes to fill out. The samples and information collected from you will be used to create a database and central biorepository (a special laboratory where samples are stored) that will be used for future research.
Description This research study has 1 study group made up of people with low blood counts who are undergoing care for their condition. Patients in the study may be followed for life. Information for the study will be collected during office visits, by phone, by mail, or by medical record review. This will occur every 6 months.
- Suspected MDS or MDS/MPN overlap disorders and and undergoing diagnostic work-up with planned bone marrow assessments OR diagnosed with de novo or therapy-related MDS within 6-months of enrollment and undergoing clinical evaluation and planned bone marrow assessments to confirm MDS or to evaluate disease status
- Bone marrow aspirate expected to be performed within 1 week of registration, and in all cases must be performed no later than 4 weeks after enrollment
- Age 18 or older
- No prior treatment for MDS at entry and through the time of the entry bone marrow aspirate
- No treatment with hematopoietic growth factors in prior 6 months
- No diagnosis of a solid tumor or hematologic malignancy within two years prior to enrollment except for in situ cancer of the skin (basal or squamous cell), cervix, bladder, breast, or prostate
- No treatment with radiation therapy in the two years prior to registration
- No non-hormonal treatment for malignancy within the two years prior to registration
- No established hereditary bone marrow failure syndrome
- No known primary diagnosis of aplastic anemia, classical paroxysmal nocturnal hemoglobinuria, amegakaryocytic thrombocytopenic purpura, or large granular lymphocyte leukemia
- Not enrolled in the Connect® MDS/AML Disease Registry
Applicable Disease Sites Hematologic cancers, other; Leukemia
Therapies Involved Not Applicable
Participating Institutions UW Hospital and Clinics; UWCCC 1 South Park; VA Hospital, Madison, WI