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mester information is collected on NPI, IA and APA- The strength of the REGISTRY study lies in its collabo-
DEM-NH. Information from Day Center patients is ga- rative nature. We can all participate: subjects with
thered through telephone interviews with relatives of genetic mutation and symptoms, subjects with the
reference. In the first semester information is collec- genetic mutation without symptoms, subjects des-
ted on NPI, Cornell Scale for Depression in Dementia, cended from a family with a history but they ignore
CMAI and IA: In the second semester information is whether they have the mutation, subjects descen-
collected on NPI and IA. ded from a family with a history but have a negative
genetic study, subjects who are not descended
This systematic data collection since the patient be- from a family with affected people... Starting from
comes part of the study untileither is transferred to the information gathered, a large database of bio-
another Day Center or the patient dies, along with logical and clinical data (blood and urine) will be
systematic information collected at neurological, created to enable:
neuropsychological and functional level allow the
creation of a clinical database that can be exploi- - Better understand the natural progression of
ted by themselves or in combination with neuroima- Huntington's disease and the factors involved,
ging and/or neuropathology data. besides the Huntington gene, at its onset,
presentation and progression.
Project REGISTRY
- Identifying disease modifiers at the genetic,
REGISTRY is an international multicenter observatio- biological and environmental level.
nal study conducted by the European Group on
Huntington's disease (EHDN, for its acronym in Spa- - Identify more accurate and reliable HD
nish) with the following objectives: biomarkers.
- Obtain data from the natural history of the - Review the drugs used in the management of
disease in a large spectrum of people symptoms of HD.
affected by Huntington's Disease (HD).
- Assessing co-morbilities with HD.
- Develop new measurement instruments to - Study the less frequent types of Huntington
monitor or predict the onset and progression
of the disease as well as improve existing disease (as juvenile EH).
tools. - For many people it is a chance to participate in
- Determine how the environmental and future clinical trials and intervention studies.
genetic factors influence both the onset of
symptoms and progression of the disease and REGISTRY is being carried out in 173 centers from 20
determine the family variability of these European countries and has already registered more
factors. than 12,000 subjects. Among these centers is the
CIEN Foundation, where 33 participants were regis-
- Accelerate the identification and inclusion of tered during 2014.
participants in clinical trials.
Since the second half of 2015, REGISTRY is gradually
- Planning future observational or interventional transitioning to ENROLL-HD, a prospective registry
research studies aimed at better control study of a global cohort with HD (Europe, USA, Ca-
symptoms and delay the disease onset or nada, Argentina, Chile and others).
slow the progression of Huntington's disease.
CIEN Foundation Annual Report 2015 / 42
