Clinical recommendations

Clinical recommendations

More information at CDSPCystinosis

Cystinosis Clinical Decision Support Programme (CDSP)

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.


Cystinosis global clinical recommendations

The cystinosis global clinical recommendations have been designed by the steering committee, offering practical advice to improve clinical outcomes for cystinosis patients.1 These guidelines are intended to be complementary to, not a substitution for, existing guidelines and consensus documents.

Explore the cystinosis global clinical recommendations in full

The recommendations cover a wide range of topics, including:

clical guidance
Clinical guidance and resources
general considerations
General considerations
Multidisciplinary approach
Patient well being
Patient well-being

as well as:

Fertility impact and family planning
Renal considerations
Nervous system and neurocognitive aspects
Muscle involvement

Endocrine aspects
GI and hepatological involvement
Dental care
Quality of life and psychological aspects
Diet and lifestyle

Explore the sections below to find out more.


Disease background

Types of cystinosis and pathophysiology of nephropathic cystinosis

Find out

Identifying symptoms

Clinical characteristics of cystinosis through different life stages

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Diagnosing cystinosis

Investigations required to support a diagnosis of cystinosis

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General management

Recommendations for management and monitoring of cystinosis patients

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Clinical recommendations

Explore the cystinosis Clinical Decision Support Programme (CDSP)


HCP tools and resources

Useful tools and resources for you and your patients

Find out