Alpha 1-Antitrypsin Deficiency
Conditions
Keywords
AATD, ALPHA 1, COPD, AAT, ZZ, MZ, CARRIER, MM, MS, PiZZ
Brief 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.
Detailed description
The purpose and goal of the Alpha-1 Research Registry (Registry, or group of patients) will be to obtain uniform, longitudinal (over the course of time), complete and accurate data that can be organized, and made available for the public to query. The collective number of Registry members enables investigators to enroll sufficient subjects to carry out their studies. The community benefits from having more research and potential therapies performed in their disease. Regular updates from patients will give objective data-points to measure the progression of disease.
Interventions
None listed
Sponsors
Alpha-1 Foundation
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.) * Alpha-1 carriers (PiMZ, PiMS etc.)
Exclusion criteria
* Failure to provide informed consent * Normal healthy individuals (MM)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Establish the Alpha-1 Research Registry using REDCap | 8 years | To gather accurate patient data for longitudinal prospective follow up/analysis of Alpha-1 progression. |
Countries
United States
Contacts
CONTACTAlison Keaveny, MBBS
CONTACTRandel Plant
PRINCIPAL_INVESTIGATORJeanine D'Armiento, MD, PhD
Alpha-1 Foundation
Outcome results
None listed