Principal Investigator: Michael Benatar, MD, PhD
This prospective study is designed to investigate the early manifestations of disease in people with recently diagnosed ALS (either familial or sporadic). We accomplish this by studying the unaffected regions of people with ALS. In addition to understanding the earliest phases of the disease, we aim to identify biomarkers of pre-symptomatic ALS.
Eligible study participants:
- Individuals affected with ALS (sporadic or familial)
- Healthy controls
All participants are recruited primarily from the Miami area and undergo 5 study visits, 1 every 3 months, at the University of Miami. A number of study procedures are performed at each visit, including the collection of biological samples, MRI, physiological and cognitive testing, and motor tasks and a neurological examination. Participants are remunerated $100 per completed study visit.
All study participants:
- Male or female between 18 and 95 years of age.
- Willingness to undergo study procedures and comply with visit schedule.
Specific to individuals affected with ALS:
- Currently affected with ALS (sporadic or familial) or an ALS-related disorder.
- At least one body region (arm, leg, bulbar) that is still clinically unaffected.
Specific to healthy controls:
- Not affected with ALS or an ALS-related disorder.
- No family history of ALS or an ALS-related disorder.
Physiology and Motor Function
- Ralf Reilmann, MD, PhD (University of Munster, Germany)
- Seward Rutkove, MD (Beth Israel Deaconess Medical Center)
- Oleg Butovsky, PhD (Brigham and Women’s Hospital, Boston)
- Mary-Louise Rogers, PhD (Flinders University, Australia)
- Claes Wahlestedt, MD, PhD (University of Miami)
- Zane Zeier, PhD (University of Miami)
- Heather Katzen, PhD
- Anne Cooley, MPH
- Email: firstname.lastname@example.org
- Phone: 1-888-413-9315
- Benatar M, Wuu J, Ravits J. Opportunity and innovation in studying pre-symptomatic amyotrophic lateral sclerosis. Muscle Nerve. 2013;47(5):629-31. [ Pubmed Link ]
- Benatar M, Reilmann R, Schubert R, Reyes E, Seleski C, Cooley A, Wuu J. Quantitative Motor Testing: Biomarker of Pre-Symptomatic ALS? Platform presentation at the 27th International Symposium on ALS/MND, Dublin, Ireland, Dec 7-9, 2016.
- van Blitterswijk M, Finch NA, Wang X, Baker MC, Heckman MG, Gendron TF, Bieniek KF, Wuu J, DeJesus-Hernandez M, Brown PH, Chew J, Jansen-West KR, Daughrity LM, Nicholson AM, Murray ME, Belzil VV, Lee EB, Josephs KA, Parisi JE, Knopman DS, Petersen RC, Petrucelli L, Boeve BF, Graff-Radford NR, Asmann YW, Dickson DW, Benatar M, Bowser R, Boylan KB, Rademakers R. Expression of homeobox genes and transthyretin is changed in C9ORF72 expansion carriers. Platform presentation at the 27th International Symposium on ALS/MND, Dublin, Ireland, Dec 7-9, 2016.
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