Alpha-1 Research Registry Protocol
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
• Alpha-1 carriers (PiMZ, PiMS etc.)
Locations
United States
Florida
Alpha-1 Foundation
RECRUITING
Coral Gables
Contact Information
Primary
Alison Keaveny, MBBS
akeaveny@alpha1.org
1-877-228-7321
Backup
Randel Plant
rplant@alpha1.org
1-877-228-7321
Time Frame
Start Date: 2019-06-20
Estimated Completion Date: 2029-06-20
Participants
Target number of participants: 4000
Treatments
Alpha-1 Diagnosed Individuals
Larger patient cohorts are needed to support the clinical trials coming in the next 3-5 years. Despite widespread invitations to the Alpha-1 community from the Alpha-1 Foundation Research Registry, it is estimated that the Alpha-1 Foundation Research Registry now contains \<40% of the identified PiZZ individuals in the US.
Carriers of Alpha-1
Larger patient cohorts are needed to support the clinical trials coming in the next 3-5 years. Despite widespread invitations to the Alpha-1 community from the Alpha-1 Foundation Research Registry, it is estimated that the Alpha-1 Foundation Research Registry now contains \<40% of the identified PiZZ individuals in the US.
Authors
Related Therapeutic Areas
Sponsors
Leads: Alpha-1 Foundation