The project
The cystinosis clinical decision support programme (CDSP) is a new project that aims to support healthcare professionals in their daily practice with their cystinosis patients. The project offers educational and practical tools to support management of adolescent and adult patients living with multi-organ effects of cystinosis.
Objective
In this site you will find tools that may support you in your daily practice when treating young adults and adult patients with cystinosis:
- CYSTINOSIS GLOBAL CLINICAL RECOMMENDATIONS
Designed by the Steering committee to offer practical advice to improve clinical outcomes for adolescents and adults living with the multi-organ effects of cystinosis. Complementary to (not a substitution of) already published guidelines & consensus documents
- CYSTINOSIS CLINICAL CONSULTATION CHECKLIST
Compiled by a steering committee of clinicians and designed to support HCPs in their regular consultations with adolescent or adult patients. It has the following purposes:
- To help HCPs ensure that all aspects of the multi-organ effects of cystinosis are monitored so that nothing is overlooked as a potential area of concern.
- To help HCPs decide whether the patient needs to be also seen by a specialist.
Board
The CDSP Governance is composed of a Steering committee of 6 international experts with experience in treating cystinosis or other rare tubulopathies, which leads the project and drive contents, and a Expert faculty, including a broader number of international experts in the area, which provides additional support on specific topics and provides inputs and reach consensus on specific clinical recommendations.
Steering committee:
- Professor Nicholas Webb (Professor of Paediatric Nephrology, UK)
- Dr Aude Servais (Nephrology and Transplant Specialist, France)
- Professor Anibh Das (Professor of Paediatric Metabolic Medicine, Germany)
- Dr Sally Hulton (Consultant Paediatric Nephrology, UK)
- Professor Elena Levtchenko (Professor of Paediatrics, Belgium)
- Professor Christoph Wanner (Professor of Nephrology, Germany)
Expert faculty:
- Dr Gema Ariceta (Consultant Paediatric Nephrology, Spain)
- Dr Hong Liang (Consultant Ophthalmology, France)
- Professor Karin Lange (Professor of Medical Psychology, Germany)
- Professor Francesco Emma (Professor of Paediatric Nephrology, Italy)
- Professor Rezan Topaloglu (Professor of Paediatric Nephrology, Turkey)
- Dr Rebecca Sberro-Soussan (Consultant Transplant Nephrology, France)
- Dr David Game (Consultant Adult Nephrology, UK)
- Dr Risto Lapatto (Consultant Metabolic Disease, Finland)
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Acknowledgements
The authors gratefully acknowledge the advice and guidance provided by the external experts, Dr Cyril Goizet and Dr Graham Lipkin.
The authors extend special thanks to Cystinosis Network Europe (CNE), at http://cystinosis-europe.eu for their insightful review of this document. CNE received no honorarium or payment for this review.
Medical writing support was provided by Vivid Medical Communications, a member of the Lucid Group.
Date of preparation: September 2021.
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Patients & Caregivers: in case of need to report an adverse drug reaction, please refer to your physician, asking him to fill in and submit the relevant case report to the concerned Health Authority, according to the Pharmacovigilance requirements in force in your Country. Nevertheless, please be kindly reminded that each patient can report any such cases directly to the national reporting system.
Healthcare Professionals: in case you want to report an adverse drug reaction you become aware of, please report it to your Health Authority according to the requirements set by the pharmacovigilance legislation.
This informational website is not intended for residents of the United States.