EHDN Behavioural Phenotype WG

The primary purpose of this Working Group is to further understanding
of the behavioural phenotype in all stages of Huntington’s disease. We
do this by developing and validating novel assessments of HD behavioural
symptoms, and validating the use of existing psychiatric assessment tools
in HD populations, for use in clinical research.

Aims

Improve knowledge of behavioural symptoms of HD

Review and develop measures to assess behavioural symptoms of HD

Identify gaps in assessment of HD behavioural symptoms (eg perseveration) and longitudinal change, relationship with imaging, cognitive symptoms etc.

Provide training to the HD research community on the assessment of behavioural symptoms and the administration of research measures.

Develop online resources to support HD community members—including gene carriers, family members, and caregivers—with managing behavioural symptoms associated with Huntington’s Disease.

Behavioural data analyses

Development of guidelines

Collaboration

Collaborate with other EHDN Working Groups (e.g. Multidisciplinary WG, Psychological Interventions WG) to develop and conduct research projects which further elucidate the behavioural phenotype of HD.

Collaborate with other HD research networks globally (e.g. HSG Behavioural WG)

Provide a platform for researchers and clinicians to share knowledge; to allow early-career researchers access to expertise in HD behavioural symptoms.

Projects

Previous projects

Callaghan J, Stopford C, Arran N, Boisse MF, Coleman A, Santos RD, Dumas EM, Hart EP, Justo D, Owen G, Read J, Say MJ, Durr A, Leavitt BR, Roos RA, Tabrizi SJ, Bachoud-Levi AC, Bourdet C, van Duijn E, Craufurd D. Reliability and Factor Structure of the Short Problem Behaviors Assessment for Huntington’s Disease (PBA-s) in the TRACK-HD and REGISTRY studies. J Neuropsychiatry Clin Neurosci. 2015 Winter; 27(1): 59-64. PMID: 25716488

van Duijn E, Craufurd D, Hubers AA, Giltay EJ, Bonelli R, Rickards H, Anderson KE, van Walsem MR, van der Mast RC, Orth M, Landwehrmeyer GB; the European Huntington’s Disease Network Behavioural Phenotype Working Group. Neuropsychiatric symptoms in a European Huntington’s disease cohort (REGISTRY). Journal of Neurology, Neurosurgery & Psychiatry 2014 Dec; 85(12): 1411-8). PMID: 24828898

Groves M, van Duijn E, Anderson K, Craufurd D, Edmondson MC, Goodman N, van Kammen DP, Goodman L. An international survey-based algorithm for the pharmacologic treatment of Irritability in Huntington’s disease. PLoS Currents Huntington Disease 2011 Sep 2. Edition 1. doi: 10.1371/currents.RRN1259. PMID: 21975525

Anderson K, Craufurd D, Edmondson MC, Goodman N, Groves M, van Duijn E, van Kammen DP, Goodman L. An international survey-based algorithm for the pharmacologic treatment of Obsessive-compulsive behaviours in Huntington’s disease. PLoS Currents 2011 Sep 20; 3: RRN1261. PMID: 21947193

Hubers AAM, van Duijn E, Roos RAC, Craufurd D, Rickards H, Landwehrmeyer GB, van der Mast RC, Giltay EJ, and the REGISTRY investigators of the European Huntington’s Disease Network: Suicidal ideation in a European Huntington’s disease population. Journal of Affective Disorders 2013; 151: 248-258. PMID: 23876196

Ongoing projects

The WG welcomes contact from EHDN members and associate members.

Contact

	Lead Facilitator: Mayke Oosterloo, MD Maastricht University Medical Center Maastricht, The Netherlands
	Co-lead Facilitator: Duncan James McLauchlan, PhD Cardiff University Cardiff, UK
	Associated EHDN Language Area Coordinators: Danielle Cantono Warmenhuizen, The Netherlands
	Isaura Vanoppen Hasselt, Belgium

last update 3 September 2026