Planeta bolilor rare
Dan Alexandru


The 24 ERNs concentrate on different disease topics with a common goal of sharing knowledge and providing high quality care for patients with rare diseases. The ERNs highlight the need of increasing the quality of the clinical practice guidelines for rare diseases.

NoRo has participated recently at the webinar Patient involvement in clinical practice guideline organized by ERN ReCONNET.
Guidelines are tools for practitioners to make informed decisions. The process of guideline development should therefore be explicit and transparent in order to minimize bias and possible conflicts of interest. For this purpose, the strict adherence to the GRADE approach is encouraged.  The GRADE approach additionally requires discussion among the guideline developers that leads to the final recommendations. These recommendations should be driven by the importance of the desired outcomes and balanced by the benefits and harms of treatment. To ensure the adherence to the GRADE approach and assure the required high-quality standards, the AGREE reporting checklist can be used as a complementary tool, together with the GRADE or a similar guideline. This checklist is intended to improve the completeness and the transparency of the guidelines.
The key message delivered  was that the need to involve patient in development of clinical guidelines and that the different healthcare organisations must collaborate, to avoid duplication and to increase the quality of their work.
Let’s listen to the opening remarks of the webinar!