Please participate in this expert-opinion survey designed by the BPWG:
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 such as the PBA-s.
- Develop a system of annual certification for PBA-s raters in order to ensure consistent data quality and enhance the confidence of behavioural interviewers (e.g. in Enroll-HD).
Behavioural data analyses
- Use data from observational studies and clinical trials to further validate the psychometric properties of behavioural assessment tools such as the PBA-s, for use in HD, and publish the results of such analyses.
- Carry out and publish data mining projects using REGISTRY/Enroll-HD data to enhance understanding of how behavioural symptoms develop and affect HD patients and families.
Development of guidelines
- Develop symptomatic treatment guidelines with a view to providing practical guidance for non-specialists in the clinical care of HD behavioural symptoms.
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
- Longitudinal analysis of behavioural data from the ENROLL-HD study
- Development of treatment guidelines for behavioural changes in late-stage Huntington’s Disease
- Development and support of psychoactive medication clinical trials
The WG welcomes contact from EHDN members and associate members.
Contact
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Lead Facilitator:
, MD
Maastricht University Medical Center
Maastricht, The Netherlands
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Co-lead Facilitator:
, PhD
Cardiff University
Cardiff, UK
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Associated EHDN Language Area Coordinator:
Warmenhuizen, The Netherlands
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last update 28 March 2025
