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.
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.
Study Type
OBSERVATIONAL
Enrollment
5,000
University of Florida
Gainesville, Florida, United States
Data and tissue samples
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.
Time frame: The total number of tissue samples received and used for research are tracked annually.
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.