NCT01953016

Participation in a Research Registry for Immune Disorders

Completed Last updated 20 July 2023

What this trial tests

trial in Primary Immunodeficiencies in 716 participants. Completed in 19 July 2023.

Timeline

30 September 2013

Primary endpoint
1 May 2020

19 July 2023

Quick facts

Lead sponsor	National Human Genome Research Institute (NHGRI)
Status	Completed
Study type	OBSERVATIONAL
Enrollment	716
Start date	30 September 2013
Primary completion	1 May 2020
Estimated completion	19 July 2023
Sites	1 location across United States

Conditions studied

• Primary Immunodeficiencies — all drugs for Primary Immunodeficiencies →
• APECED — all drugs for APECED →
• CGD — all drugs for CGD →
• Wiskott-Aldrich Syndrome — all drugs for Wiskott-Aldrich Syndrome →

Sponsor

National Human Genome Research Institute (NHGRI)

Who can join

1 Month and older, any sex, with Primary Immunodeficiencies or APECED. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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

Publications & conference data

1 peer-reviewed publication reference this trial (live from Europe PMC):

1. Complications Associated with Underweight Primary Immunodeficiency Patients: Prevalence and Associations Within the USIDNET Registry.
   Ruffner MA, USIDNET Body Weight Group, Sullivan KE. · · 2018 · cited 25× · PMID 29619656 · DOI 10.1007/s10875-018-0492-0