International guidelines for the treatment of Huntington's disease

Anne Catherine Bachoud-Lévi, Joaquim Ferreira, Renaud Massart, Katia Youssov, Anne Rosser, Monica Busse, David Craufurd, Ralf Reilmann, Giuseppe De Michele, Daniela Rae, Ferdinando Squitieri, Klaus Seppi, Charles Perrine, Clarisse Scherer-Gagou, Olivier Audrey, Christophe Verny, Jean Marc Burgunder

Research output: Contribution to journalReview articlepeer-review


The European Huntington's Disease Network (EHDN) commissioned an international task force to provide global evidence-based recommendations for everyday clinical practice for treatment of Huntington's disease (HD). The objectives of such guidelines are to standardize pharmacological, surgical and non-pharmacological treatment regimen and improve care and quality of life of patients. A formalized consensus method, adapted from the French Health Authority recommendations was used. First, national committees (French and English Experts) reviewed all studies published between 1965 and 2015 included dealing with HD symptoms classified in motor, cognitive, psychiatric, and somatic categories. Quality grades were attributed to these studies based on levels of scientific evidence. Provisional recommendations were formulated based on the strength and the accumulation of scientific evidence available. When evidence was not available, recommendations were framed based on professional agreement. A European Steering committee supervised the writing of the final recommendations through a consensus process involving two rounds of online questionnaire completion with international multidisciplinary HD health professionals. Patients' associations were invited to review the guidelines including the HD symptoms. Two hundred and nineteen statements were retained in the final guidelines. We suggest to use this adapted method associating evidence base-medicine and expert consensus to other rare diseases.

Original languageEnglish
Article number710
JournalFrontiers in Neurology
Issue numberJUL
Publication statusPublished - Jan 1 2019


  • Care
  • Clinical practice
  • Guidelines
  • Huntington's disease
  • Treatment

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


Dive into the research topics of 'International guidelines for the treatment of Huntington's disease'. Together they form a unique fingerprint.

Cite this