Alpha-1 Foundation Research Registry
Status
Conditions
Details and patient eligibility
About
The Alpha-1 Foundation Research Registry is a confidential database made up of individuals diagnosed with severe alpha-1 antitrypsin deficiency (Alpha-1) or the carrier state.
Full description
The Registry was established in 1997 by the Alpha-1 Foundation to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1. Located at the Medical University of South Carolina (MUSC) in Charleston, the Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry operates under the direction of the Alpha-1 Foundation Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, ethical, scientific and Alpha communities. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities.
Enrollment
Sex
Volunteers
Inclusion and exclusion criteria
Inclusion Criteria:
- Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency or the carrier state
Trial contacts and locations
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Data sourced from clinicaltrials.gov
Clinical trials
Research sites
Resources
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