Evaluation of the Adhesion to the GENEPY Network
- Conditions
- Hereditary Cancer SyndromeHereditary Breast and Ovarian CancerHereditary Colorectal Endometrial Cancer Syndrome
- Registration Number
- NCT03979612
- Lead Sponsor
- Institut Claudius Regaud
- Brief Summary
In order to best meet the needs of all those affected by the genetic risk of cancer in our region, it is important to identify the factors likely to influence the course leading to the GENEPY surveillance network. The aim of this study is to evaluatie the adhesion to the network of care of people at genetic risk of cancer in Midi-Pyrénées (GENEPY).
- Detailed Description
This network has been open since November 2015 for people who are genetically predisposed to breast / ovarian cancer. The extension to digestive pathologies (HNPCC syndrome, PAF) is in progress. It concerns not only the persons carrying a mutation also those belonging to a family without identified mutation but whose risk of predisposition is important.
The GENEPY network is based on a collaboration between oncogenetic consultations in the region and professionals practicing in institutions (private, public) and liberal: general practitioners, gynecologists, radiologists, oncologists, gastroenterologists, psychologists ...
It is therefore a multicentric and multidisciplinary network, which aims to promote the local care of people genetically predisposed (or considered at high risk of genetic predisposition), while ensuring a high level of competence, to guarantee an optimal and equitable care on the whole of Midi Pyrenees.
The diagnosis of a new genetic disease in an individual is likely to have implications for other family members who may themselves be at risk of developing the disease and / or passing it on to their children.
The inclusion of subjects in the GENEPY network follows the genealogical study of a case (index) : relatives are identified as potentially at risk. In accordance with the recommendations, but also generally at the wish of the patients, the index case is then asked to inform its relatives and to propose them to go to an oncogenetic consultation of their choice. If these people reside in the Midi Pyrenees Toulouse oncogenetic consultation is open to them. If following this consultation a mutation is identified or that their genetic risk is considered important, they are proposed to join the GENEPY network for their monitoring.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 450
- people with an identified mutation, predisposing to tumors of the breast / ovary or colon / rectum
- people resident in the Midi-Pyrénées region
- people under 18
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Proximity to the index case 1 day relationship of the relatives with the index case according to the latter contact
Adhesion to the GENEPY network 6 months Network membership rate : comparison between the number of relatives who received the invitation and the number of them who joined the network.
Age of relatives 1 day Age of the relative of the patient who answered the questionnaire
Place of residence of the relatives 1 day distance from the offer of care and level of deprivation (for the relative of the patient who answered the questionnaire)
Sex of relatives 1 day sex of the relative of the patient who answered the questionnaire
Cancer status Communication 1 day Patient's agreement to communicate about his illness to his relative
- Secondary Outcome Measures
Name Time Method Practionners satisfaction 1 year satisfaction of general practitioners (scale of values by questionnaire)
People satisfaction 1 year satisfaction of people who have joined the network (scale of values by questionnaire)
Trial Locations
- Locations (1)
Institut Claudius Regaud - IUCT-Oncopole
🇫🇷Toulouse, Occitanie, France