Welcome to the website of the IGPrare European project questionnaire !
Objective
This survey is intended for healthcare professionals in genetics, in order to get an insight on the diversity of approaches developped across Europe to inform patients' relatives in case of a diagnosis of genetic disease, in order for them to benefit from a genetic screening and treatments or prevention measures.
As a healthcare professional, we will ask you questions about legal provisions and recommandations in your country regarding genetic information disclosure to family. Eventually we intend to evaluate the efficiency and acceptability of these different procedures, based on patients' and professionals' experiences, and share the most accurate solutions to improve practices.
This research project is financed by the french agency of Biomedicine, following the call for research proposals "AMP, antenatal diagnosis and genetic diagnosis" (convention 20AMP014), and received a favorable opinion from the ethic commitee of Aix-Marseille University (opinion n°2021-07-08-09).
Instructions :
No locations, patients', relatives' or healthcare professionals' names should be mentionned in your answers. In order to preserve anonimity, any answers non responding this criteria will not be taken into account in our analysis.
The average time needed to completely fullfill this survey is 10 min. Your contact details and any written records of your responses during the study will be kept in secure storage which only the research team can access.
For more information about the IGPrare project, visit our website https://igprare.fr/volet-europe/
If you have any questions while taking part in this survey, you can contact : Marion Gottrau (research team member) at mariongott@gmail.com
Thank you for helping us !
