COHORTE DU RESEAU RHLF - Cohort for French Language Huntington Network

Head :
Bachoud-Levi Anne-Catherine, U841 - INSTITUT MONDOR DE RECHERCHE BIOMEDICALE (IMRB)

Last update : 07/07/2015 | Version : 2 | ID : 60079

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Cohort for French Language Huntington Network
Sign or acronym COHORTE DU RESEAU RHLF
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation Accord CNIL
General Aspects
Medical area Neurology
Health determinants Genetic
Keywords disease progression, Health episodes
Scientific investigator(s) (Contact)
Name of the director Bachoud-Levi
Surname Anne-Catherine
Phone + 33 (0)1 49 81 23 15
Email anne-catherine.bachoud-levi@hmn.aphp.fr
Unit U841 - INSTITUT MONDOR DE RECHERCHE BIOMEDICALE (IMRB)
Organization INSTITUT MONDOR DE RECHERCHE
Collaborations
Participation in projects, networks and consortia Yes
Funding
Funding status Mixed
Details GIS - Institut Maladies Rares - Association HUTINGTON FRANCE
Governance of the database
Sponsor(s) or organisation(s) responsible APHP
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Cohort study
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Prospective
Database objective
Main objective General objective: to improve patient treatment, facilitate and promote epidemiological, clinical, imaging, genetics, biology and therapeutic research
Inclusion criteria Patients with an identified genetic disease and clinical signs of recent onset.
Population type
Age Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Multicentric cohort throughout France (14 centres)
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 02/2002
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 6000
Data
Database activity Data collection completed
Type of data collected Clinical data
Declarative data
Paraclinical data
Biological data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Face to face interview
Paraclinical data (detail) Imaging
Biological data (detail) Type of samples taken: Blood count, endocrine evaluation, cholesterol
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Procedures
Participant monitoring Yes
Details on monitoring of participants (Indefinite duration)
Links to administrative sources Yes
Linked administrative sources (detail) RHLF database
Promotion and access
Promotion
Link to the document http://tinyurl.com/Pubmed-RHL
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) Data may be used by academic teams Access in accordance with RHLF charter, acceptance of project by steering committee that evaluates interest, feasibility, and network priorities, followed by information and training for network members during bi-annual plenary meetings in order to achieve the protocol. Data may not be used by industrial teams.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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