July 2, 2001—Recruitment is progressing steadily for the Sonya Slifka Longitudinal Multiple Sclerosis Study. The findings from the study will dramatically expand scientific knowledge and understanding of MS, and may help MS researchers to develop more effective ways to treat this disease.
The National MS Society is conducting this long-term study of almost 2,000 people with MS across the country, to gather information about various aspects of MS. The study is named in memory of Sonya Slifka, mother of Richard Slifka, chairperson of the national board of the Society. The Slifka family has donated $1.5 million to support the study, the first of its kind to be mounted in the United States.
The concept is simple: Monitor a representative cross-section of persons with MS throughout the country over an extended period. Similar projects have been undertaken with other populations, such as the famous Framingham Heart Study, which changed the way we understand risk factors for heart disease. As the project evolves, the Society hopes to learn what happens to people with MS over time in terms of the disease course, treatment effectiveness, economic status, and quality of life. In addition, researchers expect to add to what is known concerning the possible genetic underpinnings of MS.
Sarah Minden, MD, and colleagues at Abt Associates Inc. (Cambridge, MA) were selected by peer review to implement the Slifka study. In November 2000, Abt Associates began recruitment of participants and collection of data from a national sample of members of the Society who have MS. The sample is balanced by urban/rural residence, and by region of the United States. To date, more than 1600 persons with MS have completed baseline interviews, including over 180 individuals diagnosed with MS during the past year.
Dr. Minden and colleagues are collecting comprehensive demographic, medical, and socioeconomic information through semi-annual telephone interviews and annual physician questionnaires. In addition, DNA and annual blood samples are being taken from a subsample of recently diagnosed participants and healthy controls.
At the current pace, recruitment of participants should be completed by the fall of 2001. The ultimate goal of the study is to shed light on a variety of research questions concerning health policy, the long-term course of MS, and the possible role of genetic, immunologic, therapeutic, and socioeconomic factors in disease course and quality of life. If it proves to be successful and resources are available, the Slifka Study may become a long-term project of the Society.
The National Multiple Sclerosis Society supports more MS research and helps more people with MS than any national voluntary MS organization in the world.