Friedreich’s Ataxia – Consensus Guideline

An international panel of experts on Friedreich’s ataxia (FA) developed a treatment guideline for individuals with FA in November 2014. The Friedreich’s ataxia working group of Spierziekten Nederland assessed this guideline as comprehensive. Consequently, in early 2015, the group decided to translate the recommendations from this international guideline to replace the most recent Dutch revision (2007) of the CBO Rehabilitation Guideline for Friedreich’s Ataxia. They also added supplementary or restrictive comments tailored to the Dutch healthcare context.

Readers of the Dutch adaptation should note that the original document, spanning 250 pages, contains significantly more information than the translated recommendations. The Dutch working group encourages those who wish to deepen their understanding of FA and the evidence underlying the recommendations to consult the English-language guideline.

Scientific Basis

The international guideline used the Elements of Grading of Recommendations, Assessment, Development and Evaluation (GRADE; see Appendix A) for its scientific foundation. The GRADE system is based on the level of available scientific evidence. When no clear Level I, II, III, or IV evidence was found, but sufficient consensus existed on a topic, it was classified as Good Practice Points (GPP).

Objective

This guideline provides recommendations for the diagnosis, treatment, and management of individuals with Friedreich’s ataxia, adapted to the Dutch context. It also offers points of reference for creating inter-institutional agreements or local protocols.

Target Audience

The guideline is intended for all healthcare providers involved in the care and management of individuals with FA. It is particularly relevant for medical specialists such as (pediatric) rehabilitation physicians, (pediatric) neurologists, and general practitioners, as they may be responsible for coordinating care.