ITMO public health
Last update : 07/07/2015 | Version : 2 | ID : 60079
| 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 |
| 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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