Evaluation of the Adhesion to the Network of Care of People at Genetic Risk of Cancer in Midi-Pyrénées (GENEPY)
试验速览
- 阶段
- 不适用
- 入组人数
- 450
- 试验地点
- 1
- 主要终点
- Proximity to the index case
研究概览
简要总结
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).
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Ecologic Or Community
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —(Adult, Older Adult)
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •people with an identified mutation, predisposing to tumors of the breast / ovary or colon / rectum
- •people resident in the Midi-Pyrénées region
排除标准
- •people under 18
结局指标
主要结局
Proximity to the index case
时间窗: 1 day
relationship of the relatives with the index case according to the latter contact
Adhesion to the GENEPY network
时间窗: 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
时间窗: 1 day
Age of the relative of the patient who answered the questionnaire
Place of residence of the relatives
时间窗: 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
时间窗: 1 day
sex of the relative of the patient who answered the questionnaire
Cancer status Communication
时间窗: 1 day
Patient's agreement to communicate about his illness to his relative
次要结局
- Practionners satisfaction(1 year)
- People satisfaction(1 year)
