The Slone Epidemiology Center has implemented comprehensive, nationwide registries for long-term follow-up of newly diagnosed patients with multiple myeloma and myelodysplastic syndrome (MDS). These diseases are not widely studied outside of the context of randomized clinical trials, which frequently are conducted in highly selected populations and for relatively short periods of time. Since treatment is developing rapidly, it is important to obtain systematic information on the clinical, economic, and quality of life outcomes experienced by patients on both established and new treatment modalities. The purpose of the registries is to contribute to this body of knowledge by obtaining information directly from patients as well as from their medical records. The registry for each disease has the following specific goals:
- Obtain information on the outcomes of different treatments, including clinical events, economic outcomes, and quality of life measures.
- Measure time trends in the use of different treatment modalities.
- Obtain information on disease treatment patterns.
- Evaluate other issues among patients, such as their reasons for participating in research, and their knowledge/behavior and attitudes toward different types of therapy.
Patients are eligible to enroll up to four months following the diagnosis of myeloma or MDS and may do so via forms obtained from their physicians or directly via the registry websites. They are followed throughout the course of their disease. Information is collected from self-administered questionnaires sent to patients every six months and from their medical records. Enrollment commenced in mid-2006. As of July 2008, 765 patients had been enrolled, including 405 with myeloma and 360 with MDS.
The project is conducted as an academic activity of Boston University, with sponsorship from the pharmaceutical industry and oversight by an independent Advisory Board.
Investigators:
David W. Kaufman, Sc.D., Principal Investigator
Allen A. Mitchell, M.D., Co-Investigator
Carla M. Van Bennekom, R.N., M.P.H., Epidemiologist
Study Staff:
Theresa Anderson, R.N., Project Coordinator
Melissa Quinn, Research Data Coordinator
Doreen Keyes, Research Assistant
Jean McDonald, R.N., Medical Records Abstractor
Barbara Winters, R.N., Medical Records Abstractor
Source of funding:
Celgene Corporation with additional support from Millennium Pharmaceuticals
Study Period:
4/2006 - present
Publications:
None to date
Contact Information:
For further information, email David Kaufman at registry@slone.bu.edu or call 800-231-3769.
Participant Information:
If you are a registry participant or would like to enroll, please call us, toll-free, at 800-231-3769.
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