Objectives of the Clinical Practice Guidelines for the Management of Huntington’s Disease in Latin America
Eun 2020, Factor-h obtained a grant from Roche for a project to generate an evidence-based clinical consensus for Latin America countries. The general objective of this consensus is to approach the health problems and improve the standard of living of symptomatic and asymptomatic patients of Huntington’s disease and their families in Latin America. The program started in December 2020 and has a duration of 12-16 months.
1.1. Optimize clinical and molecular diagnosis, and genetic counseling for individuals affected by Huntington’s disease (HD) and their families in the region.
1.2. Promote the monitoring and implementation of the international guidelines for diagnosis, genetic counseling, prevention, healthcare, treatment and rehabilitation validated at a global level, in patients in the region.
- Facilitate the training of professionals in the healthcare and related areas.
- Promote the development of clinical, basic, and translational research projects for this pathology.
- Strive for the comprehensive application of the knowledge derived from this research, both in prevention strategies as well as in the diagnosis and treatment of the affected population.
- Generate multidisciplinary work teams to ensure proper treatment, rehabilitation, and genetic counseling for the affected patients and their families.
Methodology for the development of the Clinical Practice Guidelines for the Management of Huntington’s Disease in Latin America
Taking into account that the main reason for this consensus is to deliverrecommendations about the diagnosis, prevention, therapeutic management, andrehabilitation for Huntington’s disease, it is relevant for Factor H that such recommendations should be supported by scientific evidence.
In this sense, for the Guidelines section the methodology chosen for is the GRADE methodology – the Grading of Recommendations Assessment, Development and Evaluation system for grading evidence.
The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach provides a system for rating quality of evidence and strength ofrecommendations that is explicit, comprehensive, transparent, and pragmatic, and is increasingly being adopted by organizations worldwide