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Completed

NCT Number: NCT00499941

Alpha-1 Foundation Research Registry

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.

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Key information

Conditions

Alpha 1-Antitrypsin Deficiency Congenital, Hereditary, and Neonatal Diseases and Abnormalities Digestive System Diseases Emphysema Genetic Diseases, Inborn Liver Diseases Lung Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Respiratory Tract Diseases Subcutaneous Emphysema

Sex eligibility

All sexes

Study type

Observational

Primary location

Medical University of South Carolina. Division of Pulmonary and Critical Care Medicine

Charleston, South Carolina, 29425, United States

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency or the carrier state

Treatment and study plan

Primary outcomes

  1. To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency

    Time frame: Not limited

Sponsors and collaborators

Lead sponsor

Medical University of South Carolina

Other

Collaborators

  • Alpha-1 Foundation

Registry information

Important dates

Study start
2000
Primary completion
2021
Study completion
2021
First posted
Jul 12, 2007
Registry last updated
Mar 3, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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