Siclopédie
A digital tool to support patients and carers
Siclopédie is a project led by RED in collaboration with the MCGRE rare disease health network. It is a versatile digital platform that provides all the functions needed to care for people with sickle cell disease.
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Transforming the lives of people affected by the world’s most common inherited blood disorder is within our reach.
Overview
Developed by RED, Siclopédie is a shared digital platform used by patients, hospital doctors, GPs, emergency doctors and researchers.
Siclopédie is the central digital tool used by the network.
It is not simply an electronic patient record, but an integrated architecture linking:
- Daily clinical monitoring,
- Specialised research registries,
- Multidisciplinary team meetings (MDTs),
- Predictive tools currently being integrated,
- Inter-centre coordination.
In practical terms, what is Siclopédie?
Each patient has a single record that follows them when they change centre, region or partner country. This helps avoid gaps in care and keeps a clear record of treatments and complications.
Since June 2024:
- 6,800 patients have been enrolled.
- 42 centres are connected.
These figures show that Siclopédie can be deployed more widely using a model that has already been tested.
The principle is simple: one patient, one record and continuity of care across regions.
A charter sets out how Siclopédie can be accessed and used. It covers data security, confidentiality, traceability and patients' rights. The aim is to allow secure information sharing while supporting continuity of care and research.
Support us to give them a better future
Every donation funds direct action on the ground: equipping a screening centre, training a doctor or developing information tools for patients. Sickle cell disease affects millions of people but remains severely underfunded. Your support changes lives.
Our projects
We run practical programmes to support earlier diagnosis, better care and wider access to information. Our projects cover research, prevention, therapeutic patient education and access to healthcare in the regions most affected by sickle cell disease.
Our partners
RED is supported by a strong network of institutional, scientific and community partners. Within the RÊVE consortium and beyond, we combine our strengths to accelerate research and improve care wherever sickle cell disease occurs.
