The Côte d’Or Breast Cancer and Other Gynecological Cancers Registry.
The Côte d’Or breast and other gynecological cancer registry was created in 1982. It continuously and exhaustively records information on the disease and all treatments provided for all new breast or pelvic cancers diagnosed in patients living in Côte d’Or, regardless of the location of treatment.
Together, let’s overcome cancer.
The registry collaborates with all French registries (FRANCIM), INCa, Santé Publique France, the International Association of Cancer Registries (IACR) and the European Network of Cancer Registries (ENCR) for the epidemiological surveillance of gynecological cancers through the production of statistics on incidence, mortality and survival of cancers in France and worldwide by integrating data from the Côte d’Or department into the common database of cancer registries (hosted within the biostatistics department of the Hospices Civils de Lyon).
Registries are the gold standard for epidemiological surveillance of cancers at the local, national, and international levels. Epidemiological indicators (incidence, prevalence, survival, and their trends), which are regularly produced from their data, make it possible to define, manage, and evaluate public policies to combat cancer (prevention, improvement of provision, quality of care, quality of life after cancer).
The data from the Côte d’Or Breast and other Gynecological Cancer Registry are extremely valuable and enable us to answer research questions and provide “real-life” data on the treatment of gynecological cancers.
Due to the quality of its database and its age, the registry participates in numerous studies. It thus contributes to the evaluation of primary and secondary prevention actions (organized cancer screening), risk factors, diagnostic and therapeutic care of patients and the care needs of the general population.
The registry was classified AAA (Means and Methods, Public Health Interest and Research Interest) by the Registry Evaluation Committee in March 2021 and ISO 9001 certified in April 2021.
How it works
Primary breast or pelvic tumors (ovarian, endometrium, vulvar and vaginal, infiltrating and in situ cervix, as well as high-grade lesions of the cervix) diagnosed in patients residing at the time of diagnosis in the Côte d’Or department, regardless of their place of care, are recorded.
The data collected concern: the patient (identity, age and address at the time of diagnosis), sources of information, characteristics of the tumor (date of occurrence, anatomical site, histological type, conditions of diagnosis, result of the initial extension assessment and stage, place of diagnosis, treatments), existence of a known previous cancer, date of last news and vital status.
This data is then processed to produce statistics on tumor frequency, incidence, mortality, and survival, as well as their evolution over time, which can be viewed on the website www.francim-reseau.org.
These data also make it possible to answer research questions and provide “real-life” data on the treatment of gynecological cancers.
The cancer registries, authorized by the CNIL, carry out their activity of monitoring the incidence of cancers based on nominative notifications from different sources: anatomocytopathology and medical biology laboratories (examination reports), medical information departments of healthcare establishments (data from the Medicalization of Information Systems Program (PMSI)), medical services of the Health Insurance (placements on long-term illness (ALD), the cancerology-Oncolie network (summaries of multidisciplinary consultation meetings (RCP)), etc.
These notifications are compared with each other as well as with the data in the registry database (successive cross-referencing to identify new cases of cancer). The collaboration of all practitioners involved in patient care (doctors from public or private health establishments, general practitioners and specialists) allows the Registry to return to the patient’s medical file in order to confirm cases and complete the medical data that must appear in the registry database. Occasional collaboration with the regional screening structure (CRCDC-BFC) also allows the information to be completed.
New cancer cases are coded according to the International Classification of Diseases for Oncology (ICD-O-3), the TNM classification of malignant tumors (UICC) for recording stages, following the recording and coding rules of the ENCR and the Francim network.
The exhaustiveness of the Registry database is facilitated by the numerous collaborations developed over decades with all regional cancer stakeholders.
Sandrine DABAKUYO-YONLI
Scientific Director, Epidemiologist PhD, HDR
Marie-Laure POILLOT
Project Manager
Publications
Publications
Research Work
The Registry data contribute to the epidemiological surveillance of gynecological cancers in France and are used by researchers to set up studies based on population data, leading to scientific publications. The research work developed within the Registry concerns, among other things, the epidemiology of breast cancer and gynecological cancers (cervical, endometrial, ovarian) with research work focusing on the evolution of incidence and mortality, survival and prognostic factors for survival, the evolution of care and the impact on survival as well as the analysis of disparities.
Two research themes:
- Epidemiology of breast cancers and gynecological cancers: incidence, survival, prognostic factors, predictive factors, toxicity of treatments, etc.
- Evaluation of therapeutic practices based on real-life data
- Inequalities and cancer:
- Health literacy and health behavior (preventions 1st, 2nd, 3rd)
- Health literacy and organized breast cancer screening
- Socioeconomic inequalities and participation in organized breast cancer screening
- Socioeconomic inequalities and cancer care
Europe is committed to Burgundy-Franche-Comté
PROJECT NAME: Breast cancer in young women in France: living conditions after the disease and identification of sexuality profiles and fertility profiles
The European Union is co-funding a project to study the post-cancer living conditions (fertility, sexuality, return to work, quality of life, etc.) of young women diagnosed with breast cancer in France. This project also aims to identify the needs considered a priority by young women in improving the care and experience of the disease from diagnosis to post-cancer. This national research project is being carried out in collaboration with the registries of the French network of cancer registries (FRANCIM).
FEDER AMOUNT : 126 346,92€
Legislation-CNIL
The operation of the Registers is subject to regulatory authorization from the National Commission for Information Technology and Civil Liberties (CNIL).
Authorization from the CNIL of the Côte d’Or Breast Cancer and other Gynecological Cancers Registry (notice no. 1539818).
The National Commission for Information Technology and Civil Liberties (CNIL) in its deliberation No. 03-053 of 27 November 2003 adopting a recommendation relating to the processing of personal data implemented by cancer registries specified that “cancer registries must have individual data that makes it possible to eliminate double registrations, to gather and verify the information obtained on a given patient, to monitor, case by case, the development of a pathology or therapy and to carry out, where appropriate, additional investigations”. This deliberation authorises the Registry to record and collect personal data on subjects suffering from cancer residing in the department covered by the registry.
The Law authorizes doctors involved in the diagnosis and treatment of cancer patients to transmit personal data to specifically designated persons bound by professional secrecy from the registers.
Information on each case is collected according to a procedure designed to guarantee total confidentiality by authorized registry staff and is covered by medical confidentiality.
Data confidentiality is strictly respected by the registries, and all operations are anonymous.
The register managers undertake to ensure that the data is stored under conditions that guarantee its confidentiality (secure premises, regulated access to the database, backup procedures, staff bound by professional secrecy).
Paper documents are stored at the Breast Cancer and Other Gynecological Cancers Registry in a room whose access is exclusively reserved for authorized registry staff (entry authorization by electronic badge). The data are entered into the registry database, hosted on the server dedicated to the registry located in the CGFL server room in Dijon, subject to specific protections (regulated and traced access, double firewall). Access to the server is only reserved for authorized personnel with restricted and traced access (login – password). Access to the data entry software and the database are reserved for the scientific manager and authorized registry staff.
The exchange of digital files as part of the recording activity is subject to encryption before sending, regardless of the planned exchange method (physical media such as encrypted USB key, sending by email on secure messaging). This involves at least protecting files with passwords or encryption with the GNU Privacy Guard software with asymmetric keys and strong encryption (or equivalent software).
According to the CNIL, all patients must be informed of the possible inclusion of their cancer diagnosis in the Registry database, for research purposes and under the strictest confidentiality rules, by the doctors treating them or through information documents available in medical practices, care services and/or in hospital reception booklets. The information is also provided by health insurance when patients are placed on long-term illness (ALD) for cancer. The information is available in the CGFL reception booklet and on the Registry website:
People with cancer living in Côte d’Or are informed of the transmission of data on their illness to the Registry.
In accordance with the law of July 1, 1994, the persons concerned have the right to know this information, to request its modification, or even to oppose its use.
To exercise this right, they must contact the person responsible for the Registry:
Dr. Sandrine DABAKUYO YONLI
Scientific Director
Côte d’Or Breast and Other Gynecological Cancers Registry
1 Rue Professeur Marion BP77980
21079 Dijon Cedex-France
sdabakuyo@cgfl.fr
They can also contact the CGFL Data Protection Officer:
Ms. Olivera Buirey
Data Protection Officer,
1 Rue Professeur Marion BP77980
21079 Dijon Cedex, France
obuirey@cgfl.fr
Partners
The registry is part of the French network of cancer registries (Francim). Its database is integrated each year into the common Francim database managed by the Biostatistics and Bioinformatics department of the Hospices Civils de Lyon (HCL). It thus participates in the epidemiological surveillance of cancers in the general population as part of a partnership work program that brings together the Francim network, the HCL, INCa and SpFrance.
The Tumor Registry is integrated into the Clinical Research Center of the Georges François Leclerc Center.
It is a unit associated with the Inserm U1231 team – Lipid Nutrition Cancer Research Center – at the University of Burgundy.
He is actively involved in national and international collaborations resulting in publications in the field of cancer epidemiology.
Access to the database / Procedures for requesting the Registry
A Project written and signed by the investigator or, if a student, by their supervisor/supervisor must be submitted to the Scientific Manager of the Registry.
After examination of the written project by the Scientific Manager of the registry and the DPO of the CGFL, a reasoned response will be made to the project investigator.
If the request is accepted, you will need to complete and sign the Data Confidentiality Commitment Charter. Any exchange of detailed or indirectly personal data must be done in accordance with CNIL guidelines by encrypting the file(s) using GPG software, FileSender, or any other algorithm that complies with the state-of-the-art and the appendix to the general security framework of the French National Agency for Information Systems Security (ANSSI:
Registry news
Latest publications
Prevalence, clinicopathologic characteristics and long-term overall survival of early breast cancer patients eligible for adjuvant abemaciclib and/or ribociclib: Ladoire S, Kamga AM, Galland L, Reda M, Desmoulins I, Mayeur D, Kaderbhai C, Ilie S, Hennequin A, Talucier H, Jankowski C, Coutant C, Arnould L, Dabakuyo S. NPJ Breast Cancer. 2025 Feb 1;11