Guideline application submitted to the Innovation Fund
At the beginning of September we submitted a project application to the innovation fund to create an S3 guideline for cystinosis. For the first time, an S3 guideline is to be developed with the purpose of improving and standardizing diagnostics, therapy and prevention through evidence-based recommendations for all age groups for outpatient and inpatient treatments. So far, only English-language consensus recommendations are available, but no evidence-based guidelines. Due to the multi-organ involvement and the complex effects on the quality of life of the patients, the guideline will be drawn up on an interdisciplinary basis with the involvement of self-help organizations. In addition to the German specialist societies, international practitioners and specialist societies are also involved. A funding decision is not expected until the 2nd quarter of 2022.