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

No results posted yet for this study

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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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02636543 on ClinicalTrials.gov