Juvenile Rheumatoid Arthritis Research Registry

September 26, 2022 updated by: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Research Registry for Juvenile Arthritis

Juvenile rheumatoid arthritis (JRA) is the most common chronic inflammatory disease in children, and may be related to genetics. Having two siblings who both have JRA in one family is rare. The purpose of this registry is to collect patient information and blood samples from qualifying JRA siblings and their families. The goal of the registry is to further understanding of JRA as related to genetics.

Study Overview

Status

Completed

Conditions

Detailed Description

JRA is the most common chronic inflammatory pediatric rheumatic disease. JRA may be related to a complex genetic trait. It is rare to have two or more affected siblings, or sibpairs, within one family. The JRA ASP (Affected Sibpair) Registry is a nationwide effort and will collect information and blood samples from JRA sibpairs and their families. Unaffected family members (e.g., mother, father, and unaffected children) are also invited to participate.

Patients and their families may enroll in the registry in one of two ways: patients may contact the registry directly, or they may be referred to the registry through their physician. Once the family has qualified to join the registry, the family will be asked to complete a questionnaire on the medical history of their JRA-affected members. Physicians of the JRA-affected members will be asked to complete questionnaires about their patients' conditions. Family members will also be invited to provide a one-time blood sample. Information collected through the registry will help researchers identify genes involved in JRA susceptibility.

Study Type

Observational

Enrollment (Actual)

200

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Ohio
      • Cincinnati, Ohio, United States, 45229-3039
        • Cincinnati Children's Hospital Medical Center

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

siblings affected with JIA

Description

Inclusion Criteria for Patients and Their Families:

  • At least two members of a family diagnosed with juvenile rheumatoid arthritis (JRA)
  • Informed consent from the family indicating willingness to participate in the registry

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Family-Based
  • Time Perspectives: Prospective

Cohorts and Interventions

Group / Cohort
Sib Pairs
Two or more biological siblings affected with JIA.

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

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

Collaborators

Children's Hospital Medical Center, Cincinnati

Investigators

  • Principal Investigator: David N. Glass, MD, Children's Hospital Medical Center, Cincinnati

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

October 1, 1994

Primary Completion (Actual)

September 1, 2009

Study Completion (Actual)

September 1, 2009

Study Registration Dates

First Submitted

August 27, 2004

First Submitted That Met QC Criteria

August 27, 2004

First Posted (Estimate)

August 30, 2004

Study Record Updates

Last Update Posted (Actual)

September 28, 2022

Last Update Submitted That Met QC Criteria

September 26, 2022

Last Verified

September 1, 2022

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • NIAMS-102
  • N01AR42272-8-0-1 (U.S. NIH Grant/Contract)
  • NIAMS-102;N01-04-03 (Other Identifier: NIAMS, NIH)

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

product manufactured in and exported from the U.S.

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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