Evaluation of the Information Letter to Relatives in the Context of Genetic Assessments
NCT02636543 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 325
Last updated 2015-12-21
Summary
The decree of June 20th 2013 (n° 2013-527) suggests a protocol regarding the transmission of information to the relatives after genetic diagnosis of a serious condition. This decree includes a specific model of letter that can be sent to relatives by genetic professionals. We evaluated the understanding and feelings after the reading of the decree's letter (letter A) on patients and the public. A focus group drafted a new version of the letter (letter B) through these observations. The two letter models (A vs B) are compared in terms of impact through precise items (understanding and feelings) on three populations: patients, public and genetic professionals. Assumption is made that the letter B will be preferred to the letter A. Overall, we aim at giving a letter formulation accommodating as many people as possible to standardize practices.
Conditions
- Transmission of Information to the Relatives After Genetic Diagnosis
Interventions
- OTHER
-
Questionnaire after the reading of letter B.
Oral questionnaire after the reading of letter B.
- OTHER
-
Questionnaire after the reading of letters A and B
Oral questionnaire after the reading of letters A and B during individual interview.
Sponsors & Collaborators
-
University Hospital, Bordeaux
lead OTHER
Principal Investigators
-
Cécile ZORDAN, Ms · University Hospital, Bordeaux
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2015-06-30
- Primary Completion
- 2015-12-31
- Completion
- 2015-12-31
Countries
- France
Study Locations
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