ITMO public health
Last update : 07/12/2019 | Version : 4 | ID : 29212
| General | |
| Identification | |
| Detailed name | French Registry for Rare Peritoneal Tumors |
| Sign or acronym | RENAPE |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL no. 2010-297 |
| General Aspects | |
| Medical area |
Cancer research Rare diseases |
| Study in connection with Covid-19 |
No |
| Pathology (details) | Rare peritoneal tumors |
| Health determinants |
Genetic Geography Healthcare system and access to health care services Occupation |
| Keywords | epidemiological observation, peritoneal, multicentric, rare cancers, hyperthermic intraperitoneal chemotherapy, HIPEC, cytoreductive surgery, clinical registry |
| Scientific investigator(s) (Contact) | |
| Name of the director | Villeneuve |
| Surname | Laurent |
| Address |
RENAPE Hôpital Lyon Sud Hospices Civils de Lyon Bâtiment 3B 1er étage Hospices Civils de Lyon 165 Chemin du Grand Revoyet 69495 Lyon Cedex |
| Phone | +33 (04) 78 86 45 36 |
| laurent.villeneuve@chu-lyon.fr | |
| Unit | Réseau National de prise en charge des Tumeurs Rares du Péritoine (RENAPE) |
| Organization | Hospices Civils de Lyon |
| Name of the director | Glehen |
| Surname | Olivier |
| Address |
Service de Chirurgie Générale et Digestive Bât 3A 1er étage Centre Hospitalier Lyon Sud Hospices Civils de Lyon 165 Chemin du Grand Revoyet 69495 Lyon Cedex |
| Phone | + 33 (0)4 78 86 23 71 |
| olivier.glehen@chu-lyon.fr | |
| Unit | Service de Chirurgie Générale et Digestive |
| Organization | Hospices Civils de Lyon |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Details | EURACAN |
| Others | PSOGI |
| Funding | |
| Funding status |
Public |
| Details | INCa - DGOS |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Hospices Civils de Lyon (HCL) |
| Organisation status |
Public |
| Presence of scientific or steering committees |
Yes |
| Labelling and database evaluation | INCa-designation: Reference Network for Rare Peritoneal Tumors, 2019 |
| Additional contact | |
| Name of the contact | Odin |
| Surname | Cécile |
| Address |
RENAPE Centre Hospitalier Lyon Sud Bâtiment 3B 1er étage Hospices Civils de Lyon 165 Chemin du Grand Revoyet 69495 Lyon Cedex |
| Phone | +33 (04) 78 86 11 13 |
| cecile.odin@chu-lyon.fr | |
| Unit | Réseau National de prise en charge des Tumeurs Rares du Péritoine (RENAPE) |
| Organization | Hospices Civils de Lyon |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Study databases (details) |
Cohort study |
| Database recruitment is carried out by an intermediary |
A selection of health institutions and services |
| Database recruitment is is made on the basis of: |
Another treatment or procedure |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | All patients with rare peritoneal cancer may be treated by one of the teams from the RENAPE Network. |
| Database objective | |
| Main objective |
To continuously gather the most detailed information possible on all rare peritoneal cancers occurring in the national population.
To perform a situational analysis on treatment involving these patients and to formulate a research hypothesis on the effectiveness and tolerance to different treatments. |
| Inclusion criteria | Patients with rare peritoneal cancer: peritoneal mesothelioma; pseudomyxoma peritonei; gelatinous disease of the peritoneum; primary serous carcinoma of the peritoneum. desmoplastic small round cell tumour; peritoneal psammocarcinoma and diffuse leiomyomatosis. Disease confirmed histologically. |
| Population type | |
| Age |
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 |
| Pathology | K65-K67 - Diseases of peritoneum |
| C00-C97 - Malignant neoplasms | |
| D10-D36 - Benign neoplasms | |
| K38 - Other diseases of appendix | |
| K66 - Other disorders of peritoneum | |
| C00-C75 - Malignant neoplasms, stated or presumed to be primary, of specified sites, except of lymphoid, haematopoietic and related tissue | |
| C97-C97 - Malignant neoplasms of independent (primary) multiple sites | |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | 3 national expert centres; 6 expertise centres and 21 associated facilities covering the entire national territory. |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2010 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2500 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Biological data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Details of collected clinical data | Histological diagnosis; surgical data; radiological treatments and chemotherapies; vital status; recurrence and therapeutic strategy; yearly follow-up |
| Biological data (detail) | Tumor biomarkers |
| Presence of a biobank |
Yes |
| Contents of biobank |
Tissues |
| Details of biobank content | Frozen tumour tissues; paraffin blocks |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | electronic case report form (eCRF) |
| Quality procedure(s) used | Data management team; quality controls |
| Participant monitoring |
Yes |
| Monitoring procedures |
Monitoring by contact with the referring doctor |
| Details on monitoring of participants | Prospective follow-up in accordance with current good practice standards. |
| Followed pathology | K65-K67 - Diseases of peritoneum |
| C00-C97 - Malignant neoplasms | |
| D10-D36 - Benign neoplasms | |
| K66 - Other disorders of peritoneum | |
| C00-C75 - Malignant neoplasms, stated or presumed to be primary, of specified sites, except of lymphoid, haematopoietic and related tissue | |
| C97-C97 - Malignant neoplasms of independent (primary) multiple sites | |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | https://www.ncbi.nlm.nih.gov/sites/myncbi/1pMDiMhapJoAg/collections/58077119/public/ |
| Description | Publications list from RENAPE Network |
| Access | |
| Presence of document that lists variables and coding procedures |
Yes |
| 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 |
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