Information about EHDN endorsed ROCHE study

Roche Study ‘Generation-HD1’ [BN40423] jointly endorsed by EHDN and HSG

The EHDN Scientific and Bioethics Advisory Committee (SBAC) and Executive Committee (EC), as well as the Huntington Study Group (HSG) Research Advisory Committee were given the opportunity to review the study protocol of the eagerly awaited clinical trial by Roche titled ‘A Randomized, Multicenter, Double blind, Study to Evaluate the Efficacy and Safety of Intrathecally Administered RO7234292 (RG6042) in Patients with Manifest Huntington’s Disease’ to evaluate the efficacy and safety of their huntingtin lowering drug given by lumbar puncture. The good news is that the protocol was endorsed because it was felt that it was scientifically sound and there were no undue concerns about the participants’ safety. While we are looking forward to this important clinical trial we also need to remember that it is a clinical trial that tests whether the treatment will work, so there is still a long way to go until we may have a novel treatment that is approved and that doctors could prescribe.

Community letters:

Roche-Genentech global HD community letter – March 2019
Roche global HD community letter – January 2019

Confirmed participating sites

(please revisit for regular updates, also see


Hospital Universitario de Badajoz, Servicio de Neurología, Badajoz
Hospital de Cruces, Servicio de Neurologia, Barakaldo
Hospital de la Santa Creu i Sant Pau, Servicio de Neurologia, Barcelona
Hospital Clinic Servicio de Neurologia, Barcelona
Hospital Universitario de Burgos, Servicio de Neurología, Burgos
Hospital Ramon y Cajal, Servicio de Neurologia, Madrid
Fundacion Jimenez Diaz, Servicio de Neurología, Madrid
Hospital Universitario Virgen Macarena, Servicio de Neurologia, Sevilla
Hospital Universitario la Fe, Servicio de Neurologia, Valencia

United Kingdom:
Aberdeen Royal Infirmary, Medical Genectics, Aberdeen
Birmingham and Solihull Mental Health Foundation Trust, Institute of Clinical Sciences, Birmingham
Cambridge Centre for Brain Repair, Department of Clinical Nuerosciences, Addenbrookes Hospital, Cambridge
University Hospital of Wales, Division of Psychological Medicine and Clinical Neurosciences, Cardiff
Queen Elizabeth University Hospital Glasgow, Glasgow
Leeds General Infirmary, Leeds
National Hospital For Neurology and Neurosurgery, London
Central Manchester University Hospitals NHS Foundation Trust, Manchester Centre for Genomic Medicine, Manchester
John Radcliffe Hospital, Oxford
Sheffield Childrens NHS Trust, Genectics Department, Sheffield
University Hospital Southampton NHS Foundation Trust, Southampton

Northern America:

University of Alberta Hospital, Edmonton, Alberta
University of British Columbia Hospital, Division of Neurology, Vancouver, British Columbia
True North Clinical Research-Halifax, Halifax, Nova Scotia
Centre for Movement Disorders, North York, Ontario
Ottawa Hospital Research Institute, Ottawa, Ontario
Centre Hospitalier de l’Université de Montréal (CHUM), Montreal, Quebec

United States:
Uab Medicine, Birmingham, Alabama
Barrow Neurological Institute, Phoenix, Arizona
University of California San Diego, La Jolla, California
Stanford Univ Medical Center, Palo Alto, California
SC3 Research Group, Inc, Pasadena, California
University of California Davis Medical System, Sacramento, California
Rocky Mountain Movement Disorders Center, Englewood, Colorado
Georgetown University, Research Division, Psychiatry, Washington, District of Columbia
University of South Florida, Tampa, Florida
Northwestern University, Evanston, Illinois
John Hopkins University School of Medicine, Baltimore, Maryland
Beth Israel Deaconess Medical Center, Boston, Massachusetts
Washington University School of Medicine, Saint Louis, Missouri
Columbia University, New York, New York
Dent Neurological Institute, Williamsville, New York
University of Pittsburgh, Pittsburgh, Pennsylvania
Vanderbilt University Medical Center, Nashville, Tennessee
The University of Texas Health Science Center at Houston, McGovern Medical School, Houston, Texas
University of Utah Clinical Neurosciences Center, Salt Lake City, Utah
Evergreen Health Care Center, Kirkland, Washington