Guideline project: SELECT – S3 Guideline for Cystinosis

Our application for a guideline has received approval from the innovation fund. The project starts on October 1, 2022 and lasts two years (until September 30, 2024). As part of this, an S3 guideline for cystinosis is to be drawn up for the first time. The goal of this guideline is to improve and standardize diagnostics, therapy and prevention for cystinosis patients through evidence-based recommendations for all age groups in outpatient and inpatient settings. So far consensus recommendations are only available in English, but no evidence-based guidelines. Due to the multi-organ involvement and the rarity of the disease, in addition to the International Pediatric Nephrology Association (IPNA) and numerous German and international practitioners and professional societies, representatives of German, European and US American self-help organizations in particular will be involved. The Danube University Krems will be responsible for processing the evidence. We will also receive advisory support from the AWMF (Working Group of Scientific Medical Societies e.V.).

Funded by the Innovation Fund (Fundnumber: 01VSF22003)

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