Alpha-1 Foundation DNA and Tissue Bank
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 Design:||Time Perspective: Prospective|
|Official Title:||Alpha-1 Foundation DNA and Tissue Bank|
- 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
|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)|
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.