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Euro Huntington's disease network [logo]
Catchment Area -

REGISTRY in Europe

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The map shows the number of sites and participants in those European countries enrolling into REGISTRY. Click on the map to make it larger. 

REGISTRY Catchment Area posters

The catchment areas of REGISTRY study sites in Europe vary from country to country. Also the distances that an HD family member travels for visiting an HD professional and/or for participation into REGISTRY differ.

Within the REGISTRY Steering Committee an initiative was taken to better understand the catchment area of REGISTRY sites. As well as to identify regions within a country that have low recruitment into the study, and to develop strategies to improve recruitment of participants from those underrepresented regions.

Data were collected in collaboration with EHDN site staff and Language Area Coordinators during early 2012. Respecting participant’s anonymity, the data were collected for the total number of participants per study site, place of residence (closest town/city) and population figures for each city or town and county. All REGISTRY sites and catchment area data were mapped. Due to limited space or missing data from sites only a selection of centres were included in the posters to give a sample of the information available. Data on subject categories and estimated numbers of HD cases at the catchment area were gathered to reflect site performance. These latter data were based on reports from January 2013.

It was concluded that the catchment area of REGISTRY study sites varies significantly between countries and within countries and can be attributed to a number of national and site-specific reasons. The data could be useful to enable strategic planning for REGISTRY, and to help flag areas where new sites may be more productively located. The data have demonstrated how far some HD participants travel to their centre and that there is often significant overlap of catchment areas between regions. The information could help in promoting and sustaining the involvement of HD family members from regions that are currently underrepresented in REGISTRY.

The significant variability in recruitment across regions is likely to be due to a number of factors, such as proximity and ease of access to the study sites, characteristics of the centre, the availability of specialist care services for HD as well as established national HD networks (e.g. France, Norway, Italy and the U.K.).
Details of each country are provided in separate posters. The data shown is updated January 2013. 
Chose a link under to access the poster.