MedTrace Logo

Participation in a Research Registry for Immune Disorders

NCT01953016 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 716

Last updated 2023-07-20

No results posted yet for this study

Summary

Background:

\- People with primary immune deficiency diseases (PIDD) have weak immune systems. This makes it hard for their bodies to fight infection. The Immune Deficiency Foundation has a network to collect data about people with PIDD. It is called the United States Immunodeficiency Network. It will help doctors and scientists better understand these disorders. The goal is to get medical data for everyone with these disorders in the U.S. and Canada. Data will be stored in a registry. Researchers can use it to study if these disorders are increasing. They can also learn how the disorders are diagnosed and treated.

Objectives:

\- To collect data on people with primary immune deficiency disorders.

Eligibility:

\- People who have a PIDD.

Design:

* Data can be added with no record of personal identity.
* Data can be added with identity kept separate. This data will be linked to the registry by a code number.
* Data for the registry includes:
* Family history
* Disease treatment
* Disease characteristics
* Medical history
* Laboratory data

Conditions

Sponsors & Collaborators

  • National Institute of Allergy and Infectious Diseases (NIAID)

    collaborator NIH

  • National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

    collaborator NIH

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Elizabeth K Garabedian, R.N. · National Human Genome Research Institute (NHGRI)

Eligibility

Min Age
1 Month
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-09-30
Primary Completion
2020-05-01
Completion
2023-07-19

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01953016 on ClinicalTrials.gov