Description: Genetic-Environmental Epidemiology in ALS       

The ALSGENES Project is an exciting new project headed by Dr. Hiroshi Mitsumoto that will explore the interaction between exposure to substances in the environment and genes as a possible cause for ALS. For this study, questions related to a person’s medical history, residential history, employment history as well as several other topics including physical activity and hobbies will be explored in depth via the administration of a comprehensive questionnaire.

Currently, we are nearing the end of Phase I, which began in September 2004, – the assessment of the reliability of the questionnaire. We are recruiting patients with ALS and a family member, friend or neighbor. In this phase we are requesting that all subjects complete the survey twice. The reason for repeating the survey is to test the reliability of the questionnaire, that is, to see how well answers given when the interview is conducted in-person compare to answers to the same questions when the survey is conducted over the phone. It is our hope that the two different ways of administration will be roughly equivalent allowing us greater flexibility in conducting surveys in Phase II of the study.

We hope to begin Phase II of the study in the January, 2005. During this phase we seek to enroll 100 patients diagnosed with ALS within the last 12 months as well as first-degree family members (parents or siblings) and married-in family members. Participation in this phase includes the completion of an interview (whether in-person or over the telephone) and a one-time blood collection for DNA analysis.

Individuals that are interested in this study should call Kate Bednarz: keb2114@columbia.edu and phone number (212) 305-2027