Behind the Scenes at EHDN


For most people with HD and their families, the European Huntington’s
Disease Network (EHDN) means the friendly and caring doctors and site
coordinators they see at their annual REGISTRY visit. They may not know
that those doctors and nurses are supported by a large group of equally
dedicated personnel that do everything from monitoring the quality of data
collected to helping translate this newsletter. This is the first in a series of
articles that will take you “behind the scenes” at EHDN and introduce you to
some of those people and the important work they are doing.
EHDN was born out of a discussion among HD professionals at the Gordon
Conference in Italy in 2003. The idea was to build an independent network
of HD clinicians, scientists and families that could facilitate collaborative
research, speed up clinical trials and improve the clinical care of those
affected by HD. ‘Fast forward’ to 2011. EHDN now has over 1,400 members
from the global HD community, and represents over 140 HD centres
across 19 countries. Today, there are more than 8,600 participants enrolled
in REGISTRY and over 6,200 biosamples have been collected. EHDN is
actively involved in important clinical trials (Horizon and MermaiHD are
examples), and is working with sponsors on protocol development, site
selection, rapid participant recruitment and study site management.
From the outset it was understood that in addition to the clinicians and scientists,
who provide their valuable time on a volunteer basis, EHDN would need a full-time staff to take care of all the administrative
and logistical tasks involved in running a large network
spanning many countries. The operational team of
EHDN now numbers more than 40 staff members who
work full-time on EHDN activities. At the core of the
operations are Central Coordination (CC) and Language
Coordination (LC), as overseen by the Executive Committee


Source: Euro HD Newsletter-Archive


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