Study Details
Developing a Database for Clinical Trials Related to Alpha-1
(IRB#: IRB_00177865)
Alpha-1 is a genetic condition that causes damage to the lungs and/or liver. This study intends to develop a database of people interested in participating in clinical trials related to alpha-1. A clinical trial is a kind of research that tests how well new approaches in medicine work for people. The database will be used to help interested people learn about and enroll in clinical trials. There are no procedures or treatments in this study. Participants will be asked to allow a small number of their medical records to be transferred to the Sponsor, who will take the data from records and store the data in the database. People in the study will be contacted every 3 months to provide health updates. People in the study will also be contacted if they qualify for a clinical trial study. Being in the study lasts as long as the study continues at the University of Utah.
- All genders
- Over 18 years old
- Volunteers with special conditions
- From Home
- Paid
Who can participate?
Gender: All genders
Age: Over 18 years old
Volunteers: Volunteers with special conditions
Location: From Home
Inclusion Criteria
- Ages 18 years and older
- U.S. resident
- Diagnosed with other types of genetic conditions related to alpha-1 deficiency
- Have a genotype PiMZ (leads to an increased risk of lung and liver disease) and a family member with severe alpha-1 deficiency who is a participant in the study
- Already enrolled into the Alpha-1 Foundation Research Registry (Alpha-1 Research Registry)
Exclusion Criteria
- Unwilling and unable to consent to any part of the study
- Lack of documentation of genotype
Will I be paid for my time?
Yes
IRB#: IRB_00177865
PI: Cheryl Pirozzi
Department: PULMONARY
Approval Date: 2024-06-01 20:20:00
Specialties: Pulmonary