Alpha-1 Research Registry

Part of paid clinical trials in Coral Gables, Florida.

Sponsor
Alpha-1 Foundation
Study ID
NCT04157049
Status
Recruiting
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Conditions

  • Alpha 1-Antitrypsin Deficiency

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

First listed
Nov 8, 2019
Start date
Jun 20, 2019
Status verified
Jan 2024
Primary completion
Jun 20, 2029
Completion
Jun 20, 2029

Study Design

Enrollment
4,000 participants (estimated)

Arms

  • Arm: 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.
  • Arm: 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.

Primary Outcome Measure

Establish the Alpha-1 Research Registry using REDCap [ Time Frame: 2 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Alpha-1 FoundationCoral GablesFlorida33134
Alison Keaveny, MBBS
[email protected]
877-228-7321
Nadine Nuchovich, MPH
[email protected]
1-877-228-7321
Jeanine D'Armiento, MD, PhD (PRINCIPAL_INVESTIGATOR)

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Alpha-1 Foundation· Coral Gables, FL

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