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NIH launches major study to unlock secrets of rare inflammatory diseases

NCT ID NCT00059748

Knowledge-focused Sponsor: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 09, 2026 · Updated 16 times

Summary

This study follows up to 5,000 people with autoinflammatory diseases (like NOMID, CANDLE, and juvenile dermatomyositis) and their healthy relatives. Researchers will collect medical history, blood samples, and imaging over 2-5 day visits to learn how these diseases work and find better ways to measure disease activity. The goal is to understand the immune system problems and genetic causes, which may lead to new treatments in the future. No experimental treatment is given in this study.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

757 people

The number who actually took part.

Started

May 2003

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with auto inflammatory diseases

Ages

2 to 100 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* INCLUSION CRITERIA: * Patients with CANDLE, SAVI, and JDM who are mutation positive for the disease or fulfill clinical criteria of the disease. * Patients who fulfill criteria for definite or probable JDM * Patients with other suspected autoinflammatory diseases * There is: * 2 years old or older * Patients or their legal guardians need to be able and willing to give informed consent and a pediatric patient needs to be willing to assent to the protocol whenever possible. Relatives of patients with autoinflammatory diseases or healthy volunteers may be included for genetic testing. The genetic evaluations will be conducted in collaboration with Dr. Fleisher's laboratory at the Clinical Center laboratory and other groups. We may also collect blood for serum and RNA analyses to establish a cohort of healthy controls that is matched in age, gender and ethnicity to the study patients. Skin biopsies for research may be requested from patients, patient relatives and healthy volunteers EXCLUSION CRITERIA: * Active malignancy or any medical condition that in the opinion of the investigator would warrant exclusion * Inability to return for follow up visits * Pregnancy * Adults without the capacity to consent

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Conditions

The condition(s) this trial relates to.

autoinflammatory syndrome catastrophic antiphospholipid syndrome chronic recurrent multifocal osteomyelitis CINCA syndrome cryopyrin-associated periodic syndrome dermatomyositis exanthem Inflammation juvenile dermatomyositis myositis disease proteasome-associated autoinflammatory syndrome 1 proteosome-associated autoinflammatory syndrome sterile multifocal osteomyelitis with periostitis and pustulosis STING-associated vasculopathy with onset in infancy systemic-onset juvenile idiopathic arthritis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Autoinflammatory disease Juvenile dermatomyositis

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

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