Evaluation of the Adhesion to the GENEPY Network

NCT03979612 | Unknown

• 1 other identifier: 18HLGENE03
• Study Type: observational
• Target: 450
• Locations: 1 country
• Sites: 1

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).

Conditions

Hereditary Cancer Syndrome; Hereditary Breast and Ovarian Cancer; Hereditary Colorectal Endometrial Cancer Syndrome

Keywords

breast; hereditary; cancer; ovarian; predisposition

Outcome Measures

Primary Outcomes (6)

• 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 Outcomes (2)

• People satisfaction

  1 year

• Practionners satisfaction

  1 year

Interventions

inclusion of subjects in the GENEPY network GENETIC

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.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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.

You may qualify if:

• people with an identified mutation, predisposing to tumors of the breast / ovary or colon / rectum
• people resident in the Midi-Pyrénées region

You may not qualify if:

• people under 18

Sponsors & Collaborators

• Institut Claudius Regaud: lead

Study Sites (1)

Institut Claudius Regaud - IUCT-Oncopole

Toulouse, Occitanie, 31059, France

Location

Related Publications (2)

• Eisinger F, Bressac B, Castaigne D, Cottu PH, Lansac J, Lefranc JP, Lesur A, Nogues C, Pierret J, Puy-Pernias S, Sobol H, Tardivon A, Tristant H, Villet R. [Identification and management of hereditary breast-ovarian cancers (2004 update)]. Pathol Biol (Paris). 2006 May;54(4):230-50. doi: 10.1016/j.patbio.2006.02.002. Epub 2006 May 2. French.

  PMID: 16632260 RESULT

• Landsbergen K, Verhaak C, Kraaimaat F, Hoogerbrugge N. Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Fam Cancer. 2005;4(2):115-9. doi: 10.1007/s10689-004-7991-2.

  PMID: 15951961 RESULT

Related Links

• General information from National Institue for Cancer (INCa)

MeSH Terms

Conditions

Neoplastic Syndromes, Hereditary; Hereditary Breast and Ovarian Cancer Syndrome; Colorectal Neoplasms, Hereditary Nonpolyposis; Neoplasms; Disease Susceptibility

Condition Hierarchy (Ancestors)

Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Breast Neoplasms; Neoplasms by Site; Ovarian Neoplasms; Endocrine Gland Neoplasms; Ovarian Diseases; Adnexal Diseases; Genital Diseases, Female; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Genital Neoplasms, Female; Urogenital Neoplasms; Genital Diseases; Breast Diseases; Skin Diseases; Skin and Connective Tissue Diseases; Endocrine System Diseases; Gonadal Disorders; Colorectal Neoplasms; Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; DNA Repair-Deficiency Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Edith Chipoulet, Msc

CONTACT

0531156009; chipoulet.edith@iuct-oncopole.fr

Anne-Laure Fize, MSc

CONTACT

0531155059; fize.annelaure@iuct-oncopole.fr

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: PROSPECTIVE
• Target Duration: 1 Day
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 4, 2019
• First Posted: June 7, 2019
• Study Start: August 1, 2019
• Primary Completion: October 31, 2019
• Study Completion: December 31, 2020
• Last Updated: June 7, 2019

Record last verified: 2019-06

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)