It all started at a meeting of patient organizations in Germany, where I met a representative of the Crohn's & Colitis Foundation in the USA, who told me about her role as Clinical Trial Ambassador and her work in supporting patients according to clinical research.

Her tasks are to create awareness among the population of the importance of clinical research and to support patients who turn to her with questions about clinical studies and the translation of technical terms.

I found this idea so impressive that I asked patient organizations in Austria, the Czech Republic, Croatia and other countries whether they would like to introduce this role as “ambassador for clinical research” in their organizations.

Often patients do not know that there is an opportunity to participate in clinical trials and medical terms in this context are often incomprehensible, as is the course of a clinical trial. Too little or incorrect information can lead to fear and rejection. The lack of knowledge and the fear associated with it mean that many clinical studies have to be terminated prematurely because too few patients participate, which is of benefit neither to the operators of the studies nor to the patients.



Clinical research ambassadors as trained members of patient organizations are a trusted resource and point of contact for patients.

In numerous workshops, a total of nine representatives from patient organizations for psoriasis and IBD (Crohn's disease, ulcerative colitis) jointly developed their new role, profile, tasks, guidelines, a logo in different languages, presentations and a website.

Virtual discussions were held with pharmaceutical companies and doctors to introduce the project and the ambassadors for clinical research.

Of course, the patient representatives involved need information about the ongoing studies in order to be able to explain them to patients on request.

Therefore, regular CT ambassador conferences will take place in the future, in which medical representatives from industry and research / clinics present their ongoing studies. In the field of psoriasis, there are already further CT ambassador candidates in Denmark, Greece and Portugal and the expansion to other diseases in Europe is planned.

Ingeborg Beunders