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New tool aims to capture daily life with rare inflammatory diseases

NCT ID NCT03569644

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026

Summary

This study involved 39 adults and children with autoinflammatory diseases like FMF and Still's disease. Researchers conducted interviews to understand how these conditions affect quality of life. The goal was to create a tool that doctors can use to better assess and address patients' needs.

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.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

39 people

The number who actually took part.

Started

Jun 2018

Finished

Apr 2021

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Any patient (child and adult) with one of the 6 AIDs (FMF, TRAPS, MKD or CAPS, PFAPA or Still's disease) regardless of the activity of the disease. The diagnosis will have been made by the referring physician according to criteria specific to each AIDs * Volunteer to participate in the study * With at least one parent present at the consultation if it is a child under 18 years old * For minors, agreement of the parents or their legal representative or one of the present parents * Information for children as far as their age and condition allow * Affiliation to a national health insurance. Exclusion Criteria: * patient or relative (according to age)refuse to participate. * Bad understanding of French. * Other chronic inflammatory pathology associated (example: Crohn's, SPA, uveitis, psoriasis ...)

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Conditions

The condition(s) this trial relates to.

cryopyrin-associated periodic syndrome familial Mediterranean fever hereditary periodic fever syndrome mevalonate kinase deficiency PFAPA syndrome systemic-onset juvenile idiopathic arthritis TNF receptor 1-associated periodic fever syndrome

As listed by the trial registrant

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

Hereditary autoinflammatory diseases

Contacts and locations

Locations

  • CH André Mignot

    Le Chesnay, France, 78150, France

  • Dr Maryam PIRAM

    Le Kremlin-Bicêtre, 94270, France

  • TENON

    Paris, Paris, 75020, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.