Alpha-1 Foundation DNA and Tissue Bank

This study is enrolling participants by invitation only.
Alpha-1 Foundation
Information provided by (Responsible Party):
University of Florida Identifier:
First received: April 17, 2009
Last updated: April 3, 2014
Last verified: April 2014

This is a long-term follow-up banking protocol that collects medical information and tissue (blood, liver and lung) samples for future research; use of data and samples for research purposes is overseen by the Tissue Bank Advisory Committee; the purpose of the Bank is to further research on alpha-1 antitrypsin deficiency.

Alpha 1 Antitrypsin Deficiency

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: Alpha-1 Foundation DNA and Tissue Bank

Resource links provided by NLM:

Further study details as provided by University of Florida:

Primary Outcome Measures:
  • Data and tissue samples [ Time Frame: The total number of tissue samples received and used for research are tracked annually. ] [ Designated as safety issue: No ]
    At the end of 15 years the tissue and data sample usage will be analyzed to determine continuation of the project. Each year the investigator provides a summary to the Alpha-1 Foundation.

Biospecimen Retention:   Samples With DNA

blood, liver and lung

Estimated Enrollment: 5000
Study Start Date: December 2002
Estimated Study Completion Date: December 2020
Estimated Primary Completion Date: December 2020 (Final data collection date for primary outcome measure)
Detailed Description:

Subject participation includes completion of informed consent, medical questionnaire, and email authorization. Subjects may provide a blood sample for alpha-1 antitrypsin genotype, phenotype and level. Lung and liver tissue may also be provided if available. Subjects may be contacted no more often than annually for updated information.

This project has a certificate of confidentiality from NIH.


Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population

subjects with alpha-1-antitrypsin deficiency, carriers of deficient alleles and interested individuals


Inclusion Criteria:

  • all interested individuals may enroll

Exclusion Criteria:

  • there are no exclusion criteria
  Contacts and Locations
Please refer to this study by its identifier: NCT00884455

United States, Florida
University of Florida
Gainesville, Florida, United States, 32610
Sponsors and Collaborators
University of Florida
Alpha-1 Foundation
Principal Investigator: Mark L Brantly, MD University of Florida
  More Information

Responsible Party: University of Florida Identifier: NCT00884455     History of Changes
Other Study ID Numbers: AATD Tissue Bank
Study First Received: April 17, 2009
Last Updated: April 3, 2014
Health Authority: United States: Institutional Review Board

Keywords provided by University of Florida:
tissue banking, research

Additional relevant MeSH terms:
Alpha 1-Antitrypsin Deficiency
Liver Diseases
Digestive System Diseases
Lung Diseases
Respiratory Tract Diseases
Genetic Diseases, Inborn
Subcutaneous Emphysema
Pathologic Processes processed this record on April 15, 2014