跳至主要内容
临床试验/NCT03979612
NCT03979612Unknown不适用

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

Institut Claudius Regaud1 个研究点 分布在 1 个国家目标入组 450 人开始时间: 2019年8月1日最近更新:
适应症

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

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)

研究者

申办方类型
Other
责任方
Sponsor

研究点 (1)

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