REGISTRY is a Europe-wide study run by the EURO-HD Network. REGISTRY is a database of all HD patients throughout Europe with information about their genetic status, lifestyle, medical history and disease progression. We will also soon be collecting blood and urine samples for Europe-wide biomarker studies. The aim of REGISTRY is to collect as much information as possible that can be used to tell us about how HD affects different people. The REGISTRY database will also be used to identify possible patients for large clinical trials when these begin.
Registry assessments are carried out annually and take about 20-45 minutes depending on what information is needed. The initial REGISTRY assessment consists of a full medical interview (including questions about your family), a neurological examination and an optional short battery of psychology tests. Patients whose genetic tests were carried out elsewhere or a long time ago may be asked to give another specimen so the length of the abnormal gene can be measured in our laboratory.
Since 2006, REGISTRY participants have been invited to give blood and urine samples which will be sent to EURO-HD and used for EURO-HD studies into the genetics of HD and the search for biomarkers. Giving blood and urine samples is completely voluntary and you can still enrol in REGISTRY if you would rather not give a blood or urine sample.
REGISTRY assessments are usually carried out in the HD Multidisciplinary Clinic. If you wish to enrol in REGISTRY, it is usually a good idea to arrive early and tell a staff member that you wish to enrol, so that there will be enough time to carry out all the necessary paperwork and assessments.
To take part in REGISTRY at UCL/UCLH you must:
Patients with some medical conditions, or taking certain medications that may interfere with the tests, cannot take part in REGISTRY.
|Download the study information sheet for patients with HD|
|Contact the study team for more information:
Miss Nicola Robertson
|You will need Adobe Reader to view information sheets. Click here to download it.|