To move us closer to a world free of MS, the National MS Society takes the leading role in advocacy, research, and treatment for people living with this disease. The Sonya Slifka Longitudinal MS Study will prove invaluable for all three areas of service.
In the same way that the legendary Framingham Heart Study revolutionized the way we look at heart disease, this study tracks a large, diverse sample of people with MS, looking for patterns that will lead to better treatments and possibly even a cure. Initiated with a gift from Society friend, Richard Slifka, and named in honor of his mother, the study follows the same participants for years.
Researchers are interviewing thousands people with MS via telephone every six months, asking about how MS influences their daily lives, how effective their treatments are, and how they utilize health care. The study also collects information on economic status, quality of life, social and family issues, access to MS specialists, and more.
The information we are gathering in this study fuels many aspects of our efforts to improve quality of life for people with MS:
- by helping us to understand which therapies are working best and whether people have access to these treatments;
- by allowing us to share data — once it has been collated and identifying information removed — with the scientific community, thus fostering a partnership with MS researchers worldwide.
- by feeding advocacy groups the information they need to inform policy makers about long-term care, prescription drug coverage, and disability rights in order to reflect the best interests of people living with MS. Read more about advocacy.
- Analyses of data from the Slifka Study have yielded important findings on mental health and quality of life:
Investigators found that the characteristics of people’s MS had little impact on their mental health, but symptoms and access to health care had a strong impact on mental health.
The investigators found that people with MS had significantly lower health-related quality of life than the general population and those with diabetes, congestive heart failure, heart attack, high blood pressure or depression.
Slifka investigators joined with experts in MS genetics and depression to study whether ApoE genes – which have been associated with depression – played a role in this symptom in a subsample of 295 people recruited from the Slifka study. They found that one version of this gene might be protective against depression.
- They recently reported that people with MS who see neurologists were more likely than those who see other providers to receive treatment with disease-modifying agents and to see rehabilitation specialists and urologists. The study suggests that the 28% who consult non-neurologists for their MS care — whether because of choice, lack of access, socioeconomic and other factors — may not be receiving the latest advice or widest spectrum of treatments that have been shown to improve outcomes.
- In a study of use of disease modifying drugs, the group found that older persons and those with lower incomes were less likely to be using one of the MS drugs. Many individuals with primary progressive MS had used one of the MS drugs, even though those drugs are not indicated for that type of MS.
- Data from the study have been used to inform important advocacy issues. The study provided data for the Society’s Long-Term Care Caucus, suggesting that some 30% of people with MS need home care assistance. Echoing the general population, about 80% of that care is provided by unpaid helpers, usually family members.
- Outside investigators have been granted access to the database to investigate questions about quality of life, rehabilitation, prognostic indicators, the cost-effectiveness of therapies and others.
- The investigators are now studying 2,478 people enrolled in the second phase of the Sonya Slifka Longitudinal MS Study; this cohort is enriched with people recently diagnosed with MS, African-American and Hispanic individuals, and 18- to 24-year-olds. These groups were somewhat under-represented in the first phase of the study.