PARES: Patient-centered development of communication formats of scientific results to participants of clinical trials

Description of the study:

With the help of clinical studies, physicians can research new forms of treatment. The participation of patients and probands in studies is usually limited to being available for the monitoring of disease symptoms or being treated with therapeutic trial methods. The contact ends after the last study visit and the study participants are then no longer informed about the results of the study by the team. However, most participants wish to receive this information. It is therefore highly relevant to intensify the exchange between researchers and study participants in the future and to involve the participants in the processes of clinical studies.

In the PARES project, forms of scientific communication in layman's language between study participants and researchers will be investigated. A consortium was formed for the project, which includes participants of ongoing studies of the investigated. Clinical Neuroimmunology group, members of the study teams and representatives of patient organizations (German Multiple Sclerosis Society - DMSG). In this consortium, a questionnaire was created for study participants of completed studies.

With a survey the research team will find out which aspects/results of the respective studies are of interest to the patients/participants. What would they like to be informed about at the end of the study and in which way? The study team would like to ensure that patients/probands are involved in research processes in the way of active participation. The aim is to increase people's ability to find, understand, interpret and apply relevant health information in everyday life by disseminating scientific results in layman's language.

Contact:
Dr. med. Eva-Maria Dorsch
Email: Studienambulanz-ag-paul@charite.de
Tel. 030 450 539 040

Principal Investigators:
Dr. med. Eva-Maria Dorsch (AG Klinische Neuroimmunologie, NCRC)
PD Dr. med. Tanja Schmitz-Hübsch (AG Klinische Neuroimmunologie, NCRC)

Registration information will follow soon.

Course of the study: 06/23 – 12/23

Project partner: Deutsche Multiple Sklerose Gesellschaft