The RARE-Bestpractices work plan is organized in 8 distinct yet strategically integrated Work Packages, one of which is focused on the collaboration with IRDiRC. The overall project focuses on best practices and knowledge sharing in the clinical management of rare disease, and is aimed to create a platform to share best-practice guidelines with the final aim as helping to improve the management of rare disease patients.
Till date, two databases have been build through the project:
- RareGuidelines, a publicly searchable database for health related rare disease guidelines on 43 disease topics. Documents for inclusion in the database are identified through a structured process of searching known sources of guidelines including existing guideline clearing houses
- RAREGAP, a database that provides recommendations for research on diagnosis and treatment of rare diseases. These have been identified from systematic reviews and are presented alongside information on ongoing clinical trials where available.
In addition, several other resources have been provided by the RBP initiative, most notably the RARE Journal, a bi-annual newsletter, and various training tools and courses. These training courses are set up to acquire skills to evaluate healthcare guidelines; and for health care guidelines developers on diagnosis and treatment, both for rare diseases.
For more information about RBP, visit their website here.