Alpha 1 Antitrypsin Deficiency
Conditions
Keywords
tissue banking, research
Brief summary
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.
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.
Interventions
None listed
Sponsors
Alpha-1 Foundation
University of Florida
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
0 Years to 100 Years
Healthy volunteers
Yes
Inclusion criteria
* all interested individuals may enroll
Exclusion criteria
* there are no
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Data and tissue samples | 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. |
Countries
United States
Outcome results
None listed