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Euro Huntington's disease network [logo]
About EHDN REGISTRY - Enrolment -
How many countries and study sites are involved? How many participants are currently enrolled?

Status quo

Study countries: 21
Study sites: 175
Subjects: 14874
Study visits: 56507
Study sites are specialist centres or clinics that recruit participants into REGISTRY for longitudinal assessment.

Who is eligible to participate in REGISTRY?

REGISTRY is open to anyone from an HD family to participate. This includes HD patients and individuals who carry the genetic mutation for HD but are not showing any signs. It also includes individuals from an HD family who do not know if they have inherited the genetic mutation (i.e. at risk) and individuals who have undergone genetic testing for HD and who know they do not carry the genetic mutation.  REGISTRY also recruits control participants. This includes family members who are not blood-related to HD patients (e.g. spouses) or individuals from the general population. A full list of eligible participants is given below:
  • Individuals showing signs and symptoms of HD
  • Individuals with genetic confirmation of carrying the gene for HD without clinical features of the disease (pre-manifest subjects)
  • HD family members without clinical features and without gene testing
  • HD family members with negative gene testing
  • Non-HD family members (spouse, relative or others).

How are participants recruited?

Participants are recruited via their local EHDN study site. View the EHDN study sites or alternatively contact your Language Area Coordinator, who will be able to provide you with further information.

Where are participants examined?

Participants are examined at their local EHDN study site. For some sites, domiciliary visits may also be possible. Participants are required to attend annual visits (lasting from 30 minutes to 1.5 hours depending on the level of assessment performed).
 
What kind of data is collected?

Data is collected on the clinical signs and symptoms of HD, family history of the disease, and self-report questionnaires. A biological repository stores blood and urine samples donated by participants.

What kinds of tests and assessments are performed?
  • Information on demography, medical history, medication, comorbid conditions and activities of daily living
  • A brief neurological examination
  • A brief cognitive examination
  • Psychiatric interview
  • Family history survey
  • Self-report questionnaires
  • Collection of biosamples (blood and urine) which can be used to:
  • confirm the HD mutation
  • identify biomarkers/genetic modifiers of the disease.
Biosamples are collected only with explicit written informed consent from the participant or legal representative. Any stored sample will be destroyed on the request of the donor. Genetic testing is not carried out for control participants without a family history of HD.

Confidentiality and data protection

Data entry and management of the REGISTRY database are carried out using a web portal which can only be accessed by authorised persons. An essential safety aspect of the project is the processing of data in an exclusively pseudonymised manner to ensure that nobody other than the study site staff can trace back the person’s identity. A pseudonym (a series of 9 digits) is created from the participant’s personal data. The personal data transmitted during the pseudonymisation process are held only for a short time in the memory of a large computer (‘server’) and are then erased from the system. Following this, all data entry and use of data is exclusively carried out under the assigned pseudonym. All study site staff involved in looking after the participant during this study abide by medical confidentiality and are obliged to comply with data protection.