Fabry Pain Questionnaire English Version
Research type
Research Study
Full title
Validation of the English version of the Würzburg Fabry Pain Questionnaire (W-FPQ)
IRAS ID
218876
Contact name
Ana Jovanovic
Contact email
Sponsor organisation
Salford Royal NHS Foundation Trust
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Pain is one of the first symptoms of Fabry disease starting already in childhood. The recognition of this early “red flag” is essential to make the diagnosis and to start treatment before organ involvement. Fabry associated pain is distinct from other known pain conditions and requires special attention. It is mostly acral, episodic, and triggerable e.g. by fever, heat, or physical activity. Building upon data from the previous studies the first pain questionnaire for adult Fabry patients at the Fabry Center for Interdisciplinary Therapy (FAZIT) was developed and validated in Würzburg, Germany: the Würzburg Fabry Pain Questionnaire (W-FPQ). The W-FPQ was validated in German patients with Fabry disease resulting in an interview and self-administered version. We now aim at validating the English version of the self-administered version of the W-FPQ to make the questionnaire available also for non-German-speaking physicians and patients. For this purpose we have prepared an English version following published rules. We now plan to validate this version in the English speaking patient cohort at The Mark Holland Metabolic Unit in Manchester.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
18/NE/0010
Date of REC Opinion
9 Jan 2018
REC opinion
Favourable Opinion