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Alpha-1 Foundation DNA and Tissue Bank

This study is enrolling participants by invitation only.
ClinicalTrials.gov Identifier:
First Posted: April 20, 2009
Last Update Posted: June 2, 2017
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Alpha-1 Foundation
Information provided by (Responsible Party):
University of Florida
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: Observational Model: Other
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. ]
    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.


Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
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
Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): 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
ClinicalTrials.gov Identifier: NCT00884455     History of Changes
Other Study ID Numbers: IRB201500842 AATD Tissue Bank
First Submitted: April 17, 2009
First Posted: April 20, 2009
Last Update Posted: June 2, 2017
Last Verified: June 2017

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