MDS Registry

Slone Epidemiology Center (SEC) at Boston University recently opened a nationwide registry of myelodysplastic syndromes (MDS).  This novel study, Patient Registries at Slone: MDS, will gather information on the clinical, economic, and quality of life outcomes experienced by patients on both established treatments (including observation or supportive care) and new modalities. All MDS patients diagnosed less than three months who are US citizens are eligible to enroll in the registry; eligibility is not related to the type of treatment. 

SEC seeks to enroll as a representative sample of newly diagnosed MDS patients in order to collect information at the time of diagnosis and follow them indefinitely.   Registry participants will complete questionnaires by mail or Internet at various intervals to offer researchers information about any treatments received, symptoms experienced, and issues with daily activities. 

Physicians can help by offering enrollment packets to newly diagnosed patients.  To request enrollment packets for your office, contact SEC at 800.231.3769 or registry@slone.bu.edu.  

The Principal Investigator for Patient Registries at Slone: MDS is Dr. David Kaufman, Associate Director of Slone Epidemiology Center.  For more information, visit http://www.bu.edu/prs/mds, email registry@slone.bu.edu, or call SEC at 800.231.3769.

Patient Registries at Slone: MDS
AA&MDSIF Press Release