Fréquentation du registre français des essais cliniques en cancérologie et information recherchée par les patients et proches
A la suite à la mise en ligne d’un registre des essais cliniques en cancérologie sur le site de l’INCa, cette étude française menée auprès de 379 participants évalue sa fréquentation et les attentes des patients
Aims Cancer patients’ willingness to be informed about clinical trials (CT) and their investigation sites is rapidly increasing. The French National Cancer Institute (INCa) has created a national registry for clinical trials in oncology (Registre essais cliniques français — RECF: www.e-cancer.fr). No public information campaign has been started and data on patients’ frequentation and expectancies is not available; our study aimed to answer these questions. Procedures From February 27th to August 27th 2009, visitors (patients or relatives) to the INCa’s CT-dedicated website were asked to complete an anonymous online auto-questionnaire. Data on gender, type of cancer, time from diagnosis, knowledge about clinical research, CT participation, and quality of information delivered by the RECF was collected. Results A total of 319 questionnaires were completed. Of them: 193 (61%) were patients; 293 (92%) knew the primary site of the disease on which they were seeking information; 269 (85%) knew if it was a localized (47%) or a distant disease (38%); 206 (65%) and 235 (74%) had heard the terms clinical research and CT , respectively. Among patients who had been offered to participate to a CT, 83% had agreed to. Most of the patients found the information useful (88%) and comprehensible (89%). Conclusion Participants of this survey seemed to be well informed about their cancer and the availability of CT. They seemed satisfied by the quality and readability of the information provided by RECF. Updated data on CT was commonly searched. Public information campaigns on CT have to be promoted.