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| Sponsor: | Michael Benatar |
|---|---|
| Collaborator: |
Muscular Dystrophy Association |
| Information provided by (Responsible Party): | Michael Benatar, University of Miami |
| ClinicalTrials.gov Identifier: | NCT00317616 |
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.
| Condition |
|---|
|
Amyotrophic Lateral Sclerosis |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | The Pre-Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study |
serum, plasma, CSF, DNA, urine, cell lines
| Estimated Enrollment: | 300 |
| Study Start Date: | April 2006 |
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) on an annual basis.
Eligibility| Ages Eligible for Study: | 18 Years and older |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Healthy individuals who harbor a mutation in a gene associated with ALS.
Inclusion Criteria
Exclusion Criteria
Contacts and Locations| Contact: Eliana Reyes | 888-413-9315 | fALS@med.miami.edu |
| United States, Florida | |
| University of Miami | Recruiting |
| Miami, Florida, United States, 33136 | |
| Contact: Eliana Reyes 888-413-9315 fals@med.miami.edu | |
| Principal Investigator: | Michael G Benatar, MD, PhD. | University of Miami, Miller School of Medicine |
More Information
| Responsible Party: | Michael Benatar, MBChB, MS, DPhil, University of Miami |
| ClinicalTrials.gov Identifier: | NCT00317616 History of Changes |
| Other Study ID Numbers: | 1369-2005 |
| Study First Received: | April 24, 2006 |
| Last Updated: | April 3, 2012 |
| Health Authority: | United States: Institutional Review Board |
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FALS SOD1 familial |
genetic testing genetic counseling ALS |
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Amyotrophic Lateral Sclerosis Sclerosis Motor Neuron Disease Spinal Cord Diseases Central Nervous System Diseases Nervous System Diseases |
Neurodegenerative Diseases TDP-43 Proteinopathies Neuromuscular Diseases Proteostasis Deficiencies Metabolic Diseases Pathologic Processes |
