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Recruiting

NCT Number: NCT04157049

Alpha-1 Research Registry

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.

Recruiting

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Key information

Conditions

Alpha 1-Antitrypsin Deficiency Chronic Disease Congenital, Hereditary, and Neonatal Diseases and Abnormalities Digestive System Diseases Disease Attributes Emphysema Genetic Diseases, Inborn Liver Diseases Lung Diseases Lung Diseases, Obstructive Pathologic Processes Pathological Conditions, Signs and Symptoms Pulmonary Disease, Chronic Obstructive Respiratory Tract Diseases Subcutaneous Emphysema

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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)

Treatment and study plan

Primary outcomes

  1. Establish the Alpha-1 Research Registry using REDCap

    Time frame: 2 years

    To gather accurate patient data for longitudinal prospective follow up/analysis of Alpha-1 progression.

Study contacts

Contact information is provided by the study sponsor or research team.

Alison Keaveny, MBBS

CONTACT

[email protected]

1-877-228-7321 ext. 252

Randel Plant

CONTACT

[email protected]

1-877-228-7321 ext. 306 or 245

Sponsors and collaborators

Lead sponsor

Alpha-1 Foundation

Other

Registry information

Official study title

Alpha-1 Research Registry Protocol

Important dates

Study start
2019
Primary completion
2029
Study completion
2029
First posted
Nov 8, 2019
Registry last updated
Jan 30, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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