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August 24, 2001
The Sonya Slifka Longitudinal Multiple Sclerosis Study has completed its first stages of recruitment and data collection. The study will follow a cross-section of Americans with MS over several years. Data will be collected twice a year from individuals with MS and annually from their physicians. Analysis of the data collected thus far indicates that the more than 2,000 persons with MS participating in the study closely resemble the MS population of the United States. The data from the study will be useful in addressing a variety of scientific, clinical, and health policy issues.
The Sonya Slifka Longitudinal Multiple Sclerosis Study, the first study to attempt to follow a representative sample of the MS population in the U.S. over a long period of time using comprehensive assessment methods, has completed its first stages of recruitment and data collection. Named in honor of the mother of the current chair of the National Board of Directors for the Society, Mr. Richard Slifka, the study was initiated in 1999 through a multiyear Health Care Delivery and Policy Research contract from the Society to Dr. Sarah Minden and colleagues at Abt Associates, Inc., of Cambridge MA.
Dr. Minden and the Abt group have completed the first set of interviews of over 2,000 study participants, most of whom were recruited from among the members of the Society. Using computer-assisted telephone interviews, the study collects data on demographics, clinical characteristics, prognostic factors, treatments, health care utilization, economic status, quality of life, social and family issues, access to MS specialists and disease modifying agents, costs of the disease and more. Information is collected twice a year from all participants and annually from the physicians of a sub-sample of participants. It is intended that the collection of data will continue over many years.
Initial, or baseline, data from the study have been compared to other national samples of persons with MS. The results indicate that the Slifka Study participants represent a cross-section of Americans with MS.
Over time, the data generated in this study will help us understand the factors related to prognosis, clinical course, economic status, employment, and quality of life. These data will also have important implications for developing new treatments and therapeutic interventions for MS. The findings from the study will help in our advocacy efforts to ensure access to high quality, affordable care for people with MS and provide insight into the types of chapter programs and other supports that influence quality of life. In addition the information derived from the study will help investigators better understand disease activity and other clinical factors.
Results of the study will help answer questions such as the following. What factors prevent people with MS from accessing disease-modifying therapies? Why do people discontinue or change medications? Do persons with MS have adequate access to specialty medical care? How well do individuals on different treatment regimens fare over time? What are the best predictors of the long-term course of MS? What are the direct and indirect costs of the disease?
Information collected in the study is confidential and will be utilized for research purposes only. Results will only be reported in group form and no individuals will be identified in reports. The study database will be used by the Society, by Abt Associates and also by independent investigators who may wish to “mine” these data for diverse research purposes. Participants receive a regular newsletter with updates concerning the study. As findings become available, the National MS Society will disseminate this information to our members and staff. In addition, the study investigators will prepare reports of the findings for scientific journals and conferences. The Slifka Study promises to add significantly to what is known about MS and help to improve the lives of all those who live with this disease.
Because of the scientific nature of this project, the investigators are using a random sampling method to select individuals they invite to participate in the study. For that reason, the study cannot in general accept unsolicited volunteers. However, individuals who have been diagnosed within the past 12 months are still needed. To speak with a member of the study team, call toll-free: 1-800-848-4958.
From: Research Programs Department>