BNDMR - National Data Bank for Rare Diseases (Banque Nationale de Données Maladies Rares)
Head :
Landais Paul
Choquet Rémy
Choquet Rémy
Last update : 08/17/2016 | Version : 1 | ID : 73142
| General | |
| Identification | |
| Detailed name | National Data Bank for Rare Diseases (Banque Nationale de Données Maladies Rares) |
| Sign or acronym | BNDMR |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL |
| General Aspects | |
| Medical area |
Rare diseases |
| Health determinants |
Addictions Climate Genetic Geography Healthcare system and access to health care services Iatrogenic Intoxication Lifestyle and behavior Medicine Nutrition Occupation Pollution Social and psychosocial factors |
| Keywords | Rare diseases, medical information, patient records, CEMARA |
| Scientific investigator(s) (Contact) | |
| Name of the director | Landais |
| Surname | Paul |
| Phone | +33 (0)4 66 68 36 30 |
| paul.landais@chu-nimes.fr | |
| Organization | CHU Nimes |
| Name of the director | Choquet |
| Surname | Rémy |
| Phone | +33 1 44 49 41 14 |
| remy.choquet@upmc.fr remy.choquet@aphp.fr | |
| Organization | Hôpital Necker-Enfants malades |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | DGOS (Directorate General for Care Provision) |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | BNDMR |
| Organisation status |
Public |
| Presence of scientific or steering committees |
Yes |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Health relevant administrative databases |
| Database objective | |
| Main objective |
This database aims to:
– Better document the patient and his/her disease – Improve healthcare network organisation – Make rare diseases visible and help regulatory reporting – Better harness the potential of large national databases – Improve research within the field |
| Inclusion criteria | Patients from voluntary reference and specialist centres for rare diseases. |
| Population type | |
| Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) Early childhood (2 to 5 years) Childhood (6 to 13 years) Adolescence (13 to 18 years) Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | France |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2003 (expansion of CEMARA [CEntres MAladies RAres (Rare Disease Centres)] |
| Size of the database | |
| Size of the database (number of individuals) |
Greater than 20 000 individuals |
| Details of the number of individuals | 290,000 (37,000 new patients annually) |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Declarative data Paraclinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality Health care consumption and services |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation Medicines consumption |
| Procedures | |
| Data collection method | Innovative collection method by promoting data collection directly within the healthcare framework. National minimum data set for rare diseases – MDS. BaMaRa: secure web application interoperable with the existing hospital information system that allows data on rare diseases (patient identification, activity, diagnosis, etc.) to be entered, monitored and exploited. |
| Classifications used | Rare diseases: suitable for various clinical situations and linked to Orphanet, OMIM, HPO, CIM10 |
| Participant monitoring |
No |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI, SNIIRAM |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.bndmr.fr/espace-documentaire/publications-scientifiques/ |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact the scientist in charge. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
