Quality of Life in Patients With Auto-inflammatory Diseases — MAI-PATIENT  

Hereditary Autoinflammatory Diseases Clinical Trial

Official title: Creation of a Tool to Assess Quality of Life in Patient With Auto-inflammatory Diseases

Status Active, not recruiting

Clinical Trial Summary

This qualitative interview-based study aim to build a tool to assess quality of life in patients (adults or children) suffering from 6 autoinflammatory diseases (FMF, TRAPS, CAPS, MKD, Still and PFAPA).

Clinical Trial Description

Recent understanding of the physiopathological mechanisms that underpin autoinflammatory diseases (AIDs) allowed a revolution in the therapeutic management of these patients, particularly through the use of biotherapies. However new treatments need to be evaluated by valid tools. AIDAI score created and validated by our team evaluates activity of 4 autoinflammatory diseases. One of the important components, not explored by the scores currently available, is the impact of these treatments on quality of life (QoL) of patients. The existing quality of life scales are not adapted to these recurrent chronic pathologies. Throught a qualitative study based on interviews of patients and/ or parents, the investigators aim to build a tool to evaluate QoL in patients suffering from 6 aAIDs :familial Mediterranean fever (FMF), mevalonate kinase deficiency (MKD), tumour necrosis factor receptor-associated periodic syndrome (TRAPS), cryopyrin-associated periodic syndromes (CAPS), Still's disease and PFAPA syndrome. ;

Related Conditions & MeSH terms

• Familial Mediterranean Fever
• Hereditary Autoinflammatory Diseases

• NCT number: NCT03569644
• Study type: Interventional
• Source: Assistance Publique - Hôpitaux de Paris
• Status: Active, not recruiting
• Phase: N/A
• Start date: June 6, 2018
• Completion date: December 2020