EU-IFNp: a European study to decode the Natural History of Type I Interferonopathies

Published on 24.03.2026

Institut Imagine is proud to lead a clinical research project named “EU-IFNp”, coordinated by Professor Marie-Louise Frémond. This is a multicentric European study dedicated to children and adults with genetic type I interferonopathies (IFNp-I), conducted using real-world healthcare data, including demographic, clinical, biological, genetic, imaging, and therapeutic records. The study is supported by CRMR RAISE and the FAI²R network.

Which diseases are included?

IFNp-I are rare genetic autoinflammatory disorders characterized by excessive production or signalling of type I interferons (a cytokine normally produced during viral infection). IFNp-I encompass more than 30 conditions, including: Aicardi-Goutières syndrome (AGS), SAVI, COPA syndrome, PRAAS/CANDLE). To date, more than 40 genes have been identified as associated with these conditions.

What Are the Objectives of the EU-IFNp Study?

Through large-scale European data collection, the study aims to:

  • Improve understanding of disease mechanisms
  • Better characterise clinical phenotypes
  • Identify relevant biomarkers (diagnostic, prognostic and disease activity)
  • Support the development of more personalized therapeutic strategies

💡 Are you a clinician managing patients with type I interferonopathies?
To participate as a research center, please contact the project team (details below) to learn about inclusion procedures.

Few points :

  • Any center treating IFNp-I patients can take part, regardless of the number of IFNp-I patients under its care,
  • Data collection is standardized and simplified via REDCap electronic case report forms (eCRFs),
  • All patients with genetically confirmed IFNp-I who have not objected to the reuse of their medical data can be enrolled in the study.

👨‍👩‍👧‍👦 Are you a patient seeking more information?

Speak to your doctor, who can contact the project team. The study is also detailed on the Institut Imagine Transparency Platform, Click here and in the international clinical trials registry: www.clinicaltrials.gov/study/NCT07040774 

Contacts