Alpha-1 Foundation Research Registry
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | Any |
| Updated: | 1/30/2019 |
| Start Date: | April 2000 |
| End Date: | June 2050 |
| Contact: | Charlie Strange, M.D. |
| Email: | alphaone@musc.edu |
| Phone: | 843-792-1219 |
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.
diagnosed with severe alpha-1 antitrypsin deficiency (Alpha-1) or the carrier state.
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.
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.
Inclusion Criteria:
- Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency
or the carrier state
We found this trial at
1
site
Charleston, South Carolina 29425
Principal Investigator: Charlie Strange, M.D.
Phone: 843-792-1219
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