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New tool aims to capture daily life with rare inflammatory diseases

NCT ID NCT03569644

First seen Nov 01, 2025 · Last updated Jun 17, 2026 · Updated 31 times

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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

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.