An observational study in Hereditary Cancer Syndrome, Hereditary Breast and Ovarian Cancer and Hereditary Colorectal Endometrial Cancer Syndrome, sponsored by Institut Claudius Regaud. Status unknown at 1 site in France. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2019-06-07.
Sponsored by Institut Claudius Regaud · Observational
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).
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.
1,325 studies on the registry are indexed under Endometrial Neoplasms; 447 are open to participants now.
This study's planned enrollment of 450 is above the median of 179 across 321 observational studies indexed under Endometrial Neoplasms.
Browse Endometrial Neoplasms studies →Institut Claudius Regaud is the lead sponsor of 117 studies on the registry; 34 are open to participants now.
Counted across the registry records on this site, refreshed daily.
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 (Claes 2003), 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.
Exclusion Criteria:
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 (Claes 2003), 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.
Adhesion to the GENEPY network
Network membership rate : comparison between the number of relatives who received the invitation and the number of them who joined the network.
Time frame: 6 months
Age of relatives
Age of the relative of the patient who answered the questionnaire
Time frame: 1 day
Sex of relatives
sex of the relative of the patient who answered the questionnaire
Time frame: 1 day
Place of residence of the relatives
distance from the offer of care and level of deprivation (for the relative of the patient who answered the questionnaire)
Time frame: 1 day
Proximity to the index case
relationship of the relatives with the index case according to the latter contact
Time frame: 1 day
Cancer status Communication
Patient's agreement to communicate about his illness to his relative
Time frame: 1 day
People satisfaction
satisfaction of people who have joined the network (scale of values by questionnaire)
Time frame: 1 year
Practionners satisfaction
satisfaction of general practitioners (scale of values by questionnaire)
Time frame: 1 year
Plan to share: No
This study is status unknown, as verified in Jun 2019. You cannot join it, but the record below documents what was studied.
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Institut Claudius Regaud