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

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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