Last update : 03/14/2013 | Version : 1 | ID : 5027
| General | |
| Identification | |
| Detailed name | LOGIFER |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | -- |
| General Aspects | |
| Health determinants |
Genetic |
| Keywords | Iron overload, HFE, Hemochromatosis |
| Scientific investigator(s) (Contact) | |
| Name of the director | Bardou-Jacquet |
| Surname | Edouard |
| Address | Service des maladies du foie 4 rue Henri Le guilloux, 35000 Rennes |
| Phone | +33 (0)2 99 28 42 97 |
| Edouard.bardou-jacquet@chu-rennes.fr | |
| Unit | CIC INSERM 0203 |
| Organization | CENTRE HOSPITALIER UNIVERSITAIRE DE |
| Name of the director | Deugnier |
| Surname | Yves |
| Address | Service des maladies du foie 4 rue Henri Le guilloux, 35000 Rennes |
| Phone | +33 (0)2 99 28 42 97 |
| yves.deugnier@univ-rennes1.fr | |
| Unit | CIC INSERM 0203 |
| Organization | CENTRE HOSPITALIER UNIVERSITAIRE DE |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Appel Offre local COREC 2011 |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHU Rennes |
| 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. | All consecutive patient prospectively diagnosed with HFE C282Y hemochromatosis in our liver department |
| Database objective | |
| Main objective | Prospective follow-up of patient diagnosed with HFE C282Y hemochromatosis. Assessment of cofactor and genetic factors affecting disease expression. Assessment of death and causes of death and determination of associated risk factor |
| Inclusion criteria | All consecutive patient homozygotes for the C282Y HFE mutation |
| Population type | |
| Age |
Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | France, Brittany |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1990 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1086 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Paraclinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Paraclinical data (detail) | Liver iron concentration (Magnetic resonance imaging), liver biopsy when available, echography |
| Biological data (detail) | Blood cell count, liver biology, lipid profile, glycaemia |
| Administrative data (detail) | date and place of birth |
| Presence of a biobank |
Yes |
| Contents of biobank |
DNA |
| Details of biobank content | DNA available for a part of the patient |
| Health parameters studied |
Health event/morbidity Health event/mortality Health care consumption and services |
| Care consumption (detail) |
Medicines consumption |
| Procedures | |
| Data collection method | Biological and clinical data are gathered during the first visit to our centre |
| Participant monitoring |
Yes |
| Links to administrative sources |
Yes |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Data can be available through the main investigator of the database |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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