Constitution
The constitution of the EHDN governs its mission, principles and activities, as well as the rights and responsibilities of its elected committees, staff and members. The original constitution was drafted by the Constitution Working Group in 2005-6 and adopted by majority vote of the EHDN membership at the plenary meeting in Blankenberge, Belgium in September 2006. The constitution was subsequently amended by majority vote at the plenary meeting in Stockholm in September 2012 and then during the virtual meeting in September 2021.
Constitution
THE OF THE EUROPEAN HUNTINGTON´S DISEASE NETWORK
Table of Contents
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NAME; MISSION AND PRINCIPLES
ORGANIZATION
MEMBERSHIP
EXECUTIVE COMMITTEE; CHAIR AND DEPUTY CHAIR
STANDING EHDN COMMITTEES
ADMINISTRATION
MEETINGS OF MEMBERS
EHDN ENDORSEMENT OF PROJECTS
ACCESS TO EHDN DATA AND BIOMATERIALS
PUBLICATION AND AUTHORSHIP
ETHICS AND CONFLICTS-OF-INTEREST
AMENDMENTS; DISSOLUTION; EFFECTIVE DATE |
Executive Committee
The (EC) is the body responsible for governing the EHDN, directing and overseeing its activities and establishing its . The EC meets monthly and endorses clinical trials, approves access to clinical data and biosamples from the study, and approves applications twice per year. Its members are elected by majority vote of the EHDN membership for a term of four years. For more information on the EC, please refer to .
Members of the Executive Committee
Elected Members of the Executive Committee |
Anne Rosser
BA, PhD, MB BChir, FRCP
(Chair)
|
Cardiff University, Life Sciences Building
Cardiff, U.K.
email: |
Patrick Weydt
MD, PhD
(Deputy Chair)
|
Universitätsklinikum Bonn, Neurodegenerative Diseases
Bonn, Germany
email: |
Jaime Kulisevsky
MD, PhD
|
Hospital de la Santa Creu i Sant Pau, Neurologia
Barcelona, Spain
email: |
Caterina Mariotti
|
Fondazione IRCCS Istituto Neruologico Carlo Besta,
SOSD Genetics of Neurodegenerative and Metabolic Diseases
Milan, Italy
email: |
Alzbeta Mühlbäck
|
Kbo-Isar-Amper-Klinikum
Taufkirchen (Vils), Germany
email: |
Sandrine Humbert
PhD
|
Grenoble Institut Neurosciences, INSERM
La Tronche, France
email: sandrine.humbert@ujf-grenoble.fr |
Åsa Petersén
MD, PhD
|
Lund University
Lund, Sweden
email: |
Kathrin Reetz
MD
|
RWTH Aachen University, Department of Neurology
Aachen, Germany
email: |
Edward Wild
MA, MB, BChir, PhD, FRCP
|
University College London, Department of Neurology
London, U.K.
email: |
Appointed Members of the Executive Committee |
Robi Blumenstein
B.A., LL.B., MBA
|
President CHDI Management, Inc.
New York, USA
email: |
Dina de Sousa
|
Representative of the EHA
U.K.
email: |
Ex Officio of the Executive Committee |
Christine Capper-Loup
|
Enroll-HD Platform Biosamples / SPS Data Administration Director
Gümligen, Switzerland
email: |
Franziska Steck
|
Project Manager EHDN
Ulm, Germany
email: |
Jamie Levey
|
Chief Operating Officer
New York, USA
email: |
Tim McLean
|
Clinical Operation Manager
Edinburgh, U.K.
email: |
Scientific and Bioethics Advisory Committee
The (SBAC) meets on a monthly basis and is responsible for reviewing research projects submitted to the EHDN that require access to data and biosamples from Registry, or funding under the seed fund scheme. The SBAC sends its recommendations to the EC for further consideration and approval. The SBAC also reviews trial protocols submitted to the EHDN for endorsement. Its members are elected by majority vote of the EHDN membership for a term of four years. For more information on the SBAC, please refer to .
Members of Scientific and Bioethics Advisory Committee
Elected members of the SBAC |
(from October 2018)
Ahmad Aziz
MD, PhD
(Chair)
|
German Centre for Neurodegenerative Diseases (DZNE)
Bonn, Germany
email: |
(from October 2022)
Sandrine Betuing
PhD
|
Sorbonne University, Neuroscience Paris Seine, Institut de Biologie Paris Seine,
Paris, France
email: |
(from October 2022)
Marta Biagioli
PhD
|
Department of Cellular, Computational and Integrative Biology (CIBio), University of Trento
Trento, Italy
email: |
(from October 2022)
Silvia Gines
PhD
|
Universidad de Barcelona
Barcelona, España
email: |
(from October 2022)
Davina J. Hensman Moss
PhD
|
St George’s University of London
London, U.K.
email: |
(from October 2022)
Jiří Klempíř
MD, PhD
|
Dept. of Neurology and Center of Clinical Neuroscience, Charles University in Prague
Prague, Czech Republic
email: |
(from October 2022)
Duncan James McLauchlan
BSc(Hons) MBChB MRCP(UK), PhD
|
Cardiff University
Cardiff, U.K.
email: |
(from October 2022)
Huu Phuc Nguyen
PhD
|
Department of Human Genetics (W3)
Ruhr University Bochum
Bochum, Germany
email: |
(from October 2022)
Mayke Oosterloo
|
University of Maastricht/ Maastricht University Medical Center+
Department of Neurology
Maastricht, Netherlands
email: |
(from October 2022)
Willeke van Roon-Mom
|
Department of Human Genetics, LUMC
Leiden, Netherlands
email: |
(from October 2022)
Niels Henning Skotte
PhD
|
Copenhagen, Denmark
email: |
(from October 2022)
Chiara Zuccato
PhD
|
University of Milan
Milan, Italy
email: |
Ex Officio of the Scientific and Bioethics Advisory Committee |
Flaviano Giorgini
PhD, MA, BS
|
Implementation of EHDN’s Strategic Plan
University of Leicester, U.K.
email: |
Juliana Bronzova
MD, DSc
|
Implementation of EHDN’s Strategic Plan
Den Haag, The Netherlands
email: |
Christine Capper-Loup
PhD
|
Enroll-HD Platform Biosamples / SPS Data Administration Director
Gümligen, Switzerland
email: |
|
Peter Holmans
BA, MSc, PhD
(Co-Opted)
|
Cardiff University, Biostatistics & Bioinformatics Unit,
Dept of Psychological Medicine
Cardiff, U.K.
email: |
Heidi Bentzen
|
Bioethics Advisor
Oslo, Norway
email: |
Marie Short
|
Patient Representative
Scotland
email: |
Former Committee members of the SBAC |
Kathrin Reetz, Ahmad Aziz, Kristina Becanovic, Leonor Correia Guedes, Esther Cubo, Paola Bellosta, Jennifer Hoblyn, Katrin Lindenberg, Karine Merienne, Saul Martinez-Horta, Martha Nance, Daniel Zielonka
Elena Cattaneo, David Craufurd, Emilio Di Maria, Alexandra Dürr, Joaquim Ferreira, Lesley Jones, Christoph Kosinski, Berry Kremer, José Lucas, Ruth Luthi-Carter, Anne Rosser, Erich Wanker, Raphael Bonelli, Ralf Reilman, Ed Wild, Asa Petersen, Maria Björkqvist, Tiago Fleming Outeiro, *Stephen Dunnett, Chris Frost, Patrick Weydt, Flaviano Giorgini, Andrea Nemeth, Jennifer Thompson, Monica Busse, Erik van Duijn, Caterina Mariotti, Marta Valenza, Marina Frontali, Anne Nørremølle, Carsten Saft, Christine Verellen Dumoulin, *Pascal Borry
*co-opted members |
EHDN Think Tank
One of EHDN’s strategies is to promote research because research can deliver novel HD treatments and tools to measure their effects. Based on the 2017 Scientific Strategic Plan the EHDN Think Tank intends to complement and facilitate EHDN research initiatives.
Core members of the EHDN Think Tank
Core members of the EHDN Think Tank
|
Sandrine Humbert
PhD |
Professor
Grenoble Institut Neurosciences GIN,
INSERM U1216
Grenoble, France
email: |
Anne Rosser
BA, PhD, MB BChir, FRCP |
Professor
Cardiff University, Life Sciences Building
Cardiff, U.K.
email: |
Patrick Weydt
MD, PhD |
Universitätsklinikum Bonn, Neurodegenerative Diseases
Bonn, Germanyemail: |
Flaviano Giorgini
PhD, MA, BS
Science Director |
Professor
Department of Genetics,
University of Leicester
Leicester, U.K.
email: |
Juliana Bronzova
MD, DSc
Science Director |
Senior Consultant
Den Haag, The Netherlands
email: Juliana.Bronzova@euro-hd.net |
Jean-Marc Burgunder
MD, PhD |
Professor
NeuroZentrum Siloah
Bern, Switzerland
email: jmburgunder@bluewin.ch |
Christine Capper-Loup
MSc, PhD
Scientific Project Manager |
NeuroZentrum Siloah
Gümligen, Switzerlandemail: |
Yury Seliverstov
PhD
Think Tank Coordinator |
University Hospital of Ulm
Dept. of Neurology
Ulm, Germanyemail: |
Central Coordination
(CC) is the central hub of the EHDN. As the core of all operational activities it ensures the efficient functioning of the EHDN at the behest of the EC. Its physical headquarters are located at the University Hospital of Ulm in Germany, although most CC staff are dispersed throughout Europe. The EHDN operates as a virtual network, meaning that its staff meet regularly via teleconference or Skype and conduct face-to-face meetings several times per year. CC oversees clinical operations, science management, legal and financial administration, project management, IT coordination, training coordination and grant management.
Members of Central Coordination
Anne Rosser
BA, PhD, MB BChir, FRCP
|
(Chair)
Cardiff University, Life Sciences Building
Cardiff, U.K.
email: |
Patrick Weydt
MD, PhD
(Deputy Chair)
|
Universitätsklinikum Bonn, Neurodegenerative Diseases
Bonn, Germany
email: |
Jamie Levey
|
Chief Operating Officer
New York, USA
email: |
Franziska Steck
|
Project Manager
Ulm, Germany
email: |
Tim McLean
|
Clinical Operation Manager
Edinburgh, U.K.
email: |
Jenny Townhill
|
Director, Enroll-HD External Partnerships
Cardiff, U.K.
email: |
Flaviano Giorgini
PhD, MA, BS
|
Implementation of EHDN’s Strategic Plan
University of Leicester, U.K.
email: |
Juliana Bronzova
MD, DSc
|
Implementation of EHDN’s Strategic Plan
Den Haag, The Netherlands
email: |
Christine Capper-Loup
|
Enroll-HD Platform Biosamples / SPS Data Administration Director
Gümligen, Switzerland
email: |
Jenny
|
Enroll-HD Monitoring Strategy Director
Cardiff, U.K.
email: |
Katrin Barth
|
Enroll-HD Platform IT Director
Ulm, Germany
email: |
Olivia Handley
|
Enroll-HD Platform Director
Cardiff, U.K.
email: |
Selene Capodarca
|
Enroll-HD Global Study Director
Florence, Italy
email: |
Ruth Fullam
|
Enroll-HD Study Director, EU/ANZ
Cardiff, U.K.
email: |
Adrien Come
|
Lead Monitor
Morangis, France
email: |
Franziska Bernsdorff
|
Event Manager
Ulm, Germany
email: |
Fionnuala Margreiter
|
Grants & Collaborations Manager
Niederau, Austria
email: |
Language Area Coordinators
(Lancos) are the bridge between the EHDN and its throughout Europe. If CC is the heart of the network, Lancos are the arteries that funnel support, advice and assistance to the 150+ sites that make up the EHDN’s clinical network. Lancos are located in their respective language areas, where they provide support to study sites and liaise with local patient advocacy grops. Lancos monitor Enroll-HD and Registry data and visit sites on a regular basis to build relationships with site staff and better understand specific activities and areas of concern. In other words, they mediate between the EHDN and the study sites in a mutually beneficial way. Other Lanco activities include translating the written materials generated by the EHDN into their respective languages, organising annual site investigator meetings in their regions, assisting sites with ethical review board or ethical committee submissions, and assisting sites in the execution of .
Members of Language Coordination
Lanco Manager |
Adrien Come
|
Lead Monitor, Central Coordination
Morangis, France
email: |
Coordination of Austria, Germany and Switzerland |
|
Katrin Barth
Ulm, Germany |
email:
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|
|
Lisanne Walter
Ulm, Germany |
email:
|
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Theresia Kelm
Ulm, Germany |
email:
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Anita Zanotti
Ulm, Germany |
email:
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Annika Zeller
Ulm, Germany |
email:
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Elisabeth Singer
Ulm, Germany |
email:
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Laura Zimmermann
Ulm, Germany |
email:
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Coordination of Belgium and France |
|
Laurent Paterski
Abbeville, France |
email:
|
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Kerstin Koppers
Paris, France |
email:
|
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Eric Decorte
Villeneuve-d’Ascq, France |
email:
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|
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Coordination of Belgium and the Netherlands |
|
Danielle Cantono
Warmenhuizen,
The Netherlands |
|
|
Coordination of Czech Republic |
|
Tomas Bernard
Kladno, Czech Republic |
email:
|
|
Coordination of Denmark and Norway |
|
Olaf Syse
Oslo, Norway |
email:
|
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Coordination of Ireland and United Kingdom |
|
Hasina Hussain
Cardiff, U.K. |
email:
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Seun Samuel
London, UK |
email: |
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Nicola Robertson
London, U.K. |
email:
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Gulten Geneci
London, U.K. |
email:
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Fiona Loveday
London, U.K. |
|
email:
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Bimpe Eshilokun
London, U. K. |
email:
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Rebecca Mason
Sheffield, U. K. |
email:
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Bianca Rumsey
Leeds, U. K. |
email:
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Jolie Lewis
Cambridge, U. K. |
email:
Coordination of Italy
|
Giovanna Neri
Bari, Italy |
email:
|
Cristina Niturad
Rome, Italy |
email:
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Giulia Birolini
Milan, Italy |
email:
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Tania Velletri
Messina, Italy |
email: tania.velletri@enroll-hd.org
Coordination of Portugal
|
Madalena Esteves
Porto, Portugal |
email:
Coordination of Poland
|
Marta Laciak
Warsaw, Poland |
email:
Coordination of Russia
Coordination of Spain
|
Asuncion Martinez Descals
Madrid, Spain |
email:
|
Luz Lopez
Madrid, Spain |
email:
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Marta Eusebio
Valencia, Spain |
email:
EHDN Working Groups and Task Forces
The are vital to the success of the network since they represent a unique platform by which basic scientists, clinicians, HD patients and family members can work together on diverse issues for the benefit of the wider HD community.
June, 2024