Brief Title
Alpha-1 Foundation Research Registry
Official Title
Alpha-1 Foundation Research Registry
Brief Summary
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.
Detailed 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.
Study Type
Observational [Patient Registry]
Primary Outcome
To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency
Condition
Alpha 1-Antitrypsin Deficiency
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Estimated Enrollment
6655
Start Date
April 2000
Completion Date
January 2021
Primary Completion Date
January 2021
Eligibility Criteria
Inclusion Criteria:
- Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency
or the carrier state
Gender
All
Ages
N/A - N/A
Accepts Healthy Volunteers
Accepts Healthy Volunteers
Contacts
Charlie Strange, M.D., ,
Location Countries
United States
Location Countries
United States
Administrative Informations
NCT ID
NCT00499941
Organization ID
HR 9059
Responsible Party
Principal Investigator
Study Sponsor
Medical University of South Carolina
Collaborators
Alpha-1 Foundation
Study Sponsor
Charlie Strange, M.D., Principal Investigator, Medical University of South Carolina
Verification Date
February 2021