Description |
The Department of Pediatric Nephrology at the Klinikum Rosenheim offers an interdisciplinary Cystinosis Clinic. Due to the rarity of the disease, the unknown long-term outcome and in order to secure transition, both pediatric and adult patients are seen at the clinic. In order to meet the multi-organ involvement, the clinic follows an interdisciplinary approach which addresses all organs affected. The consultation is offered four to five times a year for two days each, with 8 patients seen per day. During the Cystinosis Clinic, patients are seen by up to 14 different specialists (pediatric and adult specialists) within one day, following the principle of a one-stop clinic. Most of the experts have been involved in the Clinic since 2012. Long-term follow-up of patients of all age groups in the permanent multidisciplinary team has already greatly enhanced the expertise regarding cystinosis. Currently, approximately 90 of the 120 patients in Germany regularly participate in the Cystinosis Clinic. In addition, patients from Switzerland, Slovenia and Italy are seen on a regular basis. The Cystinosis Clinic works in close cooperation with the Ophthalmic University Hospital of the Ludwig Maximillians University Munich, which provides high level ophthalmic diagnostics and treatment for patients. Due to hypogonadotropic hypogonadism, male patients are treated for fertility issues at the beginning of puberty at the University Clinic for Andrology in Munster, which has a special department for children and adults. Since 2019 there is a collaboration with the Department of Pulmonology (Prof. Hebestreit) of the University Würzburg. |
