Information for Physicians

The Slone Epidemiology Center at Boston University is enrolling patients who have been recently diagnosed with multiple myeloma or myelodysplastic syndrome (MDS) in a voluntary research project called Patient Registries at Slone: Myeloma and MDS. These registries 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. The registry for each disease will enroll patients soon after diagnosis and follow them indefinitely.

Since treatment for these diseases is developing rapidly, it is important to obtain systematic information on the wide range of outcomes experienced by patients outside of the context of randomized clinical trials, which frequently are conducted in highly selected populations for relatively short periods. To best assure a representative sample, the nationwide PRS: Myeloma & MDS seeks to enroll patients followed by physicians in both community settings and specialty centers. These registries will provide myeloma and MDS clinicians and researchers with generalizable outcome information that can guide both clinical decision making and future research efforts.

Patients’ participation is voluntary and confidential. Their names will not be shared with anyone outside the registry team. The registries are not clinical trials and patients’ participation will not affect their course of treatment.

The registries have been approved by the Boston University Institutional Review Board and are conducted with the guidance of an independent advisory board.

The registries are sponsored by Celgene Corporation with additional support from Millennium Pharmaceuticals.