The following information is from the Les Turner ALS Foundation web site
The research team at the Les Turner ALS Research Laboratory at Northwestern University Feinberg School of Medicine continues to recruit families for studies involving both familial (inherited) and sporadic (non-inherited) ALS. Although there will not be an immediate benefit to people living with ALS, an understanding of the causes of ALS may eventually benefit patients with the disease. The research team is optimistic that information from these studies will lead to improved methods for diagnosing ALS and provide targets from which rational treatments and even preventive measures may be developed.
Family Studies and Linkage Analysis for Familial ALS (FALS)
In this study, the research team is recruiting large non-SOD1 familial ALS (FALS) families to search for genes other than SOD1, which might cause the disease. Linkage analysis requires blood samples from at least two family members diagnosed with ALS and as many unaffected family members as possible. Through linkage analysis, the research team hopes to identify differences in gene structure between affected and unaffected family members and to find the gene causing the disease in the family. In addition, current investigations include examination of the clinical manifestations of disease in both SOD1 and non-SOD1 FALS.
Family Studies for Sporadic ALS (SALS)
In this study, the research team is trying to determine whether genetic factors may predispose an individual to developing ALS. In the past, research has looked at cause and effect in sporadic ALS one variable at a time. The team suspects that sporadic ALS may be the result of not one, but several, genetic factors coming together to produce a threshold of vulnerability, with which environmental influences may interact to produce disease. Recent advances in the field of statistical genetics make it possible to answer such questions if there are sufficient study participants available. Blood samples from ALS patients and their living parents and brothers and sisters are needed for this study. Additionally, the study needs samples from a patient and that patient’s brother or sister, who is preferably at least as old as the patient when he or she first noted symptoms of ALS.
ALS Twin Study
The research team is investigating twin pairs (either identical or fraternal twins) where either one or both twins have ALS. Blood samples are required from both the person with ALS and the twin. Additionally, a questionnaire relating to environmental exposures will be administered.
Environmental Studies for Sporadic ALS
The research team is interested in learning more about environmental factors, which may play a role in producing ALS. People living with ALS or their caregivers complete a detailed survey about the patient’s life. Questions cover such areas as place of birth and residence, types of employment, exposure to chemicals, history of major health problems, injuries and treatments and athletic endeavors. Participation in this study requires involvement in the sporadic ALS study, which entails giving a blood sample.
Each of these studies requires two tablespoons of blood from each participant. The research team will supply the needed tubes and instructions for returning the samples via Federal Express without charge to the participants. Most physicians and labs will draw the samples without charge, but the study will pay for drawing of samples if applicable.
If you and your family are interested in participating in one of these studies, contact Lisa Dellefave, M.S., at firstname.lastname@example.org or (312) 503-0154 or Nailah Siddique, R.N., M.S.N., at email@example.com (312) 503-2712.
For more information, visit the Feinberg School of Medicine’s Neuromuscular Disorders Program web site.