Welcome to the core study, the European HD-Registry.

Objectives

• Find out who might be interested and available to participate in studies
• Find out how affected people and their relatives are doing
  

Assessments

• Unified Huntington's Disease Rating scale ('99)
• Quality of life scale
• Depression rating scale
• Caregiver questionaire
• Inventory on health care resources use

Status quo

Study countries: 16

Study sites: 116

Subjects: 3709

Study visits: 8159

ARTICLE 8 – EHDN ENDORSED SCIENTIFIC PROJECTS

Article 8 of the EHDN Constitution describes the principles of data access and endorsement of scientific projects by the Scientific Review Committee of the EHDN. EHDN is committed to facilitating research on Huntington’s disease and to enabling well-powered, conclusive studies by making data collected through the efforts of many contributing sites available to competent scientific investigators who propose ethically and scientifically sound projects.
Proposers conducting scientific projects endorsed by EHDN are expected to comply with the provisions of the Constitution and By-laws including the provisions relating to Publication and Authorship (Article 10) and Ethics and Conflict-of Interest (Article 11).
Each site investigator shall retain at all times unrestricted access to all clinical data of all patients under the care of her/his study site; the scientific exploitation of these data by site investigators does not require approval of EHDN, although it is recommended that investigators keep EHDN informed of major ongoing scientific projects through the EHDN web site.
Any member of EHDN may make application to the Scientific Review Committee for endorsement of an EHDN project on clinical data and biomaterials collected through the efforts of EHDN. The Scientific Review Committee (including a bioethics advisor) shall review each application for endorsement.

ARTICLE 10 – EHDN PUBLICATION AND AUTHORSHIP POLICY

Article 10 of the EHDN Constitution describes the principles of publications, the implementation of a publication committee for each publication and future elaboration of these policies to give effect to these publication and authorship principles.
EHDN is committed to prompt publication of all valid results of scientific enquiries and to fairness to all contributors including giving opportunities for authorship and proper acknowledgement of all investigators contributing data or materials and to recognition of sponsor support for EHDN endorsed scientific projects and clinical trials.
A publication committee must be formed for each publication based on or using data or materials derived from an EHDN database or repository or resulting from collaborative efforts among members of EHDN.
Each investigator who contributes a substantial part of the data or materials, was involved in the design of the study, or was involved in the analysis of the data should be invited to join the publication committee and thus qualify as a potential author of the publication. Each investigator contributing data should be acknowledged.

EHDN Constitution