- Gironde register of hematologic malignancies
Head :
Monnereau Alain
Last update : 04/12/2012 | Version : 1 | ID : 226
| General | |
| Identification | |
| Detailed name | Gironde register of hematologic malignancies |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 903445 |
| General Aspects | |
| Medical area |
Cancer research Hematology |
| Others (details) | hematological malignancies |
| Keywords | Surveillance system, hematological malignancies, incidence data, frequency, clusters, distribution, side effects |
| Scientific investigator(s) (Contact) | |
| Name of the director | Monnereau |
| Surname | Alain |
| Address | Institut Bergonié, 229 cours de l’Argonne, 33076 Bordeaux cedex |
| Phone | + 33 (0)5 56 33 33 33 |
| monnereau@bergonie.org | |
| Organization | Institut Bergonié, Centre Régional de Lutte Contre le Cancer de Bordeaux et du |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | InVS, INCa, Institut Bergonié (Centre de Lutte Contre le Cancer de Bordeaux et du Sud Ouest) |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Institut Bergonié, Centre Régional de Lutte Contre le Cancer de Bordeaux et du Sud-Ouest |
| 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. |
Selection of subjects having the required inclusion criteria. Several sources are used to identify cases: - Gironde-based anatomopathology and cytology laboratories, - Medical information departments (DIMs) in and outside of the département, - clinical departments |
| Database objective | |
| Main objective |
One of the key objectives of the registry is to improve the health surveillance system for hematological malignancies locally in France: - by analyzing incidence data of different types of hematological malignancies: description of the frequency and distribution of each entity according to time, space and the characteristics of the population, - by producing reliable reference rates for helping the investigation of clusters, - by monitoring the side effects of therapies (e.g.: secondary leukemia), - by actively taking part in improving the surveillance system (expertise in the recording of hematological malignancies; program for improving the recording of cases in France). Clinical or evaluative epidemiology in the general population is also one of the registry's main objectives: - evaluate practices, care pathways and streams, how these change over time and the impact of practice standards on care quality and survival, - estimate the relative survival and prevalence of hematological malignancies for the purposes of comparing with other regions or countries and to estimate the resource needs of diagnosis and treatment (chemotherapy, transplant, radiotherapy) - particularly for the elderly (high proportion of cases), - evaluate the dissemination and impact of clinical research by assessing the applicability of therapeutic trials and impact of therapeutic progress on the quantity/quality of life of patients, The registry was designed from the outset as a tool for participating in - and even initiating - an epidemiological research program on hematological malignancies in several fields. Descriptive epidemiology, ecological studies or case-control studies, studies on access to health care and prognostic studies in the population, multidisciplinary research with Human and Social Sciences). |
| Inclusion criteria | Since January 1st 2002, the registry has included all incident cases of hematological malignancies (leukemia, lymphoma, myeloma, myelodysplastic syndrome, myeloproliferative syndrome) in subjects living on a regular basis in the Gironde at the time of diagnosis. |
| 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 |
Departmental |
| French regions covered by the database |
Aquitaine Limousin Poitou-Charentes |
| Detail of the geography area | Gironde |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2002 |
| Date of last collection (YYYY or MM/YYYY) | 2008 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2002-2008 : 5000 |
| 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) | full staging (imaging, osteomedullary biopsy) |
| Biological data (detail) | Initial biological examination (Full blood count, Myelogram, Osteomedullary biopsy, Immunophenotyping, Cytogenetic anomalies, Biological examinations for prognostic purposes). |
| Administrative data (detail) | Identification data, sociodemographic data |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health care consumption and services Others |
| Care consumption (detail) |
Hospitalization |
| Other (detail) | survival/etiology |
| Procedures | |
| Data collection method | Active or passive collection (electronic file) |
| Classifications used | International Classification of Diseases applied to oncology (3rd version) |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Follow-up of the vital status over at least two years. - Not carried out but planned for the follow-up of relapses: Follow-up of some types of hematological malignancy, such as follicular lymphoma and myelodysplastic syndromes, is due to be set up. This is based on an active collection of additional medical information such as the notion of histological transformation or relapse. The sources consulted will be the medical record and/or attending physician. |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI - ALD |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/18781390 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19017688 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20699439 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19058175 |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) |
Transmission to the Francim national base and then to the French Institute for Public Health Surveillance (InVS). Dissemination of aggregate data in the form of a website and newsletter. Participation in national and international studies that may concern any aspect of the epidemiology of these diseases. |
| Access to aggregated data |
Free access |
| Access to individual data |
Access on specific project only |
