Alpha-1 Research Registry
ConditionAlpha 1-Antitrypsin Deficiency
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorAlpha-1 Foundation
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
Alpha-1 carriers (PiMZ, PiMS etc.)
Disqualifiers
Failure to provide informed consent
Normal healthy individuals (MM)
Trial population
The current protocol seeks to enroll 4,000 individuals of all age, race, and sex.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
5,000 Participants
are grouped into 2 trial groupsGroup A: Alpha-1 Diagnosed Individuals
Group B: Carriers of Alpha-1
Trial outcomes
Primary outcomes
1
Establish the Alpha-1 Research Registry using REDCap
To gather accurate patient data for longitudinal prospective follow up/analysis of Alpha-1 progression.
Time frame
8 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov