Evaluation of the Adhesion to the GENEPY Network

Study Overview
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Brief Summary
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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
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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.

Official Title
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Evaluation of the Adhesion to the Network of Care of People at Genetic Risk of Cancer in Midi-Pyrénées (GENEPY)

Conditions
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Hereditary Cancer Syndrome, Hereditary Breast and Ovarian Cancer, Hereditary Colorectal Endometrial Cancer Syndrome

Intervention / Treatment
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* Genetic: inclusion of subjects in the GENEPY network


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: people with an identified mutation, predisposing to tumors of the breast / ovary or colon / rectum people resident in the Midi-Pyrénées region Exclusion Criteria: people under 18

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Intervention/Treatment |
| --- |
|Genetic: inclusion of subjects in the GENEPY network|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.|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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. | 6 months | 
| Age of relatives | Age of the relative of the patient who answered the questionnaire | 1 day | 
| Sex of relatives | sex of the relative of the patient who answered the questionnaire | 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) | 1 day | 
| Proximity to the index case | relationship of the relatives with the index case according to the latter contact | 1 day | 
| Cancer status Communication | Patient's agreement to communicate about his illness to his relative | 1 day | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| People satisfaction | satisfaction of people who have joined the network (scale of values by questionnaire) | 1 year | 
| Practionners satisfaction | satisfaction of general practitioners (scale of values by questionnaire) | 1 year | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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breast, hereditary, cancer, ovarian, predisposition