ITMO public health
Last update : 04/03/2012 | Version : 1 | ID : 203
| General | |
| Identification | |
| Detailed name | Registre Régional des Hémopathies Malignes de Basse Normandie (registre qualifié) |
| Sign or acronym | RRHMBN |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 1276682 |
| General Aspects | |
| Medical area |
Cancer research Hematology |
| Others (details) | Hematological malignancies, acute and chronic leukemia, Hodgkin's and non-Hodgkin's lymphoma, myeloma, myelodysplastic syndrome, myeloproliferative syndrome, CML |
| Keywords | Epidemiology, Specialist Registry, Lower Normandy |
| Scientific investigator(s) (Contact) | |
| Name of the director | TROUSSARD |
| Surname | Xavier |
| Address | Avenue de la Côte de Nacre – 14033 CAEN CEDEX |
| Phone | 02 31 06 50 14 |
| troussard-x@chu-caen.fr | |
| Unit |
Laboratoire d’Hématologie |
| Organization | CHU de |
| Name of the director | COLLIGNON |
| Surname | Albert |
| Address | Avenue Clémenceau – 14033 CAEN CEDEX |
| Phone | 02 31 06 23 22 |
| collignon-a@chu-caen.fr | |
| Unit | Registre Régional des Hémopathies Malignes de Basse Normandie |
| Organization | CHU de |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Institut national de veille sanitaire - INVS Institut national du cancer - INCA Autres (CHU de Caen, Ligue, UFR de médecine de Caen, Université de Caen Basse-Normandie...) |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHU de Caen |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| 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. |
Hospital and city medical analysis laboratories Anatomo-cyto-pathology laboratories Healthcare centers (specialist and non-specialist) Public and private medical information departments (DIMs) including teaching hospitals and regional cancer prevention centers Clinical hematology departments in Lower Normandy |
| Database objective | |
| Main objective |
Objectives of the Lower Normandy Specialist Regional Registry for Hematology in terms of public health (surveillance, evaluation) 1) Descriptive epidemiology and temporal and spatial monitoring of all hematological malignancies in Lower Normandy: Hodgkin's lymphoma, non-Hodgkin's malignant lymphoma, acute and chronic leukemia including chronic lymphocytic leukemia, multiple myeloma of the bones, myelodysplastic and myeloproliferative syndromes. 2) Study of the risk factors of hematological malignancies. In view of the existence in Lower Normandy of nuclear sites in the Nord-Cotentin (AREVA NC La Hague plant, Flamanville plant, ANDRA low- and intermediate-level radioactive waste repository, military arsenal servicing nuclear submarines), extra careful monitoring of hematological malignancies is carried out around these sites by the RRHMBN. Mapping of hematological malignancies is carried out in this context - in both children and adults. This does not only concern leukemia, but also all hematological malignancies, including lymphoma. Given the installation of the very high voltage line corridor between the Flamanville plant and Brittany, the RRHMBN has set up a "zero point" field for hematological malignancies in the corresponding zone. This starting point will form a reference for any subsequent research. 3) Evaluation of hematological malignancy treatment in different populations (elderly people, countryside dwellers) in Lower Normandy and study of the care streams and type of treatment depending on age, residential area and type of HM. This research will be performed jointly by all of the Lower Normandy registries brought together under a Federation as well as by the FRANCIM network, associating all accredited registries. |
| Inclusion criteria | All incident cases of hematological malignancies (HMs) as well as any previous personal HMs, previous and subsequent personal solid cancers and any family solid cancers or HMs. |
| 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 |
Regional |
| French regions covered by the database |
Normandie |
| Detail of the geography area | Lower-Normandy: Calvados, Manche and Orne départements, or a population of around 1.5 million inhabitants. |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1997 |
| Date of last collection (YYYY or MM/YYYY) | 2007 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1997- 2005 : 7341 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Paraclinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Paraclinical data (detail) | All necessary biological data for diagnosing and monitoring each type of hematological malignancy |
| Biological data (detail) | All necessary paraclinical data for diagnosing and monitoring each type of hematological malignancy |
| Administrative data (detail) | Identification data |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality Others |
| Other (detail) | Incidence |
| Procedures | |
| Data collection method | Active data collection - List of cases provided by all regional laboratories - Visit and auditing of records - Coding according to ICD-O-3 - Encrypted file (DIM) Hematological (Xavier Troussard) and epidemiological (Albert Collignon) expertise |
| Classifications used | ICDO-3 classification and ADICAP |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Vital status |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | RNIPP |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed?term |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact Prof. X. Troussard |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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