ALS Clinical Trial Research - The Northeast ALS Consortium (NEALS)

ALS CLINICAL RESEARCH STUDY The Pre-Familial ALS (Pre-fALS) Study


The Pre-Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study

Recruitment Status: Currently Recruiting

Sponsor and Collaborators:
Emory University

Purpose: We aim to recruit unaffected (healthy) people from SOD1 positive families in which at least two relatives have been affected with ALS. Our goal is to identify factors, both genetic and environmental, which put people at risk for developing ALS in the future.

Primary Outcome Measures:
Risk Factors for Progression to familial ALS.

Secondary Outcome Measures:
N/A

Estimated Enrollment: 30

Study Start Date:  April 2006

Detailed Description: Healthy people from SOD1 positive familial ALS families will be included in this study. We encourage people who know that they are SOD1 positive as well as those who do not know their SOD1 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 Emory (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

Locations & Contact Information:

Patients: Please see BELOW for a complete list of participating sites.
Patients may contact individual study coordinators at the participating sites directly.

Emory University
Sue Gronka, RN
Study Coordinator
888-413-9315
fALS@emory.edu

For more information, please visit: http://www.als-research.org/ .

 

The Northeast ALS Consortium (NEALS) 13th St Bld 149 Rm 2274 Charlestown MA  02129
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