The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study
Study Purpose:
The investigators aim to recruit unaffected (healthy) people from families with a known genetic mutation in which at least two relatives have been affected with Amyotrophic Lateral Sclerosis (ALS). Our goal is to identify factors, both genetic and environmental, which put people at risk for developing ALS in the future.
Disease:
Healthy Volunteer with a Family History of ALSStudy Type:
Observational StudyStudy Category:
Biomarkers/Imaging , EpidemiologyStudy Status:
EnrollingPhase:
Not ApplicableStudy Chair(s)/Principal Investigator(s):
Michael Benatar, MBChB, MS, DPhil (University of Miami)
Clinicaltrials.gov ID (11 digit #):
NCT00317616Neals Affiliated?
YesCoordinating Center Contact Information
University of Miami Miller School of MedicineAnne-Laure Grignon / .(JavaScript must be enabled to view this email address) / 888-413-9315
Danielle Dauphin / .(JavaScript must be enabled to view this email address) 1120 NW 14 Street, STE 1312
Miami, Florida 33136 United States
Full Study Summary:
Healthy people from familial ALS families with a known genetic mutation will be included in this study. The investigators encourage people who know that they carry the mutation that affects their family as well as those who do not know their genetic status to contact us. Those who wish to participate and to learn the results of genetic testing, may do so after undergoing genetic counseling. It is also possible to participate without learning the results of genetic testing. Participants in the study will travel to Miami (at our expense) approximately every 12-24 months to complete study visits.
Study Sponsor:
Muscular Dystrophy Association; ALS AssociationParticipant Duration:
Until appearance of manifest disease