Being involved as a reviewer in clinical trials
Being a reviewer means to be asked for your opinion and in theory should mean that your opinion should be used in improving the reviewed document or process. Patient organisations are regularly asked to review a range of documents from a patient perspective.
To identify in what way patient organisations are actively involved as a reviewer in clinical trials we asked our respondents
Is (Has) your patient organisation (been) involved in a clinical trial as a reviewer?
Overall 27% of the survey’s respondents showed to have experience on being a reviewer in a clinical trial.
In more in detail, 37 % of the respondents stated that they were involved in reviewing patient information (primarily patient information leaflets) that are to be used in a clinical trial.
Approximately 25 % of the responding organisations have experience reviewing either a clinical trial research protocol or a clinical trial refunding request.
As one of the respondents described:
“Our reading committee, composed of patients and parents trained in clinical research and reading protocols for clinical research corrects all documents submitted to it : protocols, informed consent and patient information leaflets”.
A number of trials were described in which the research protocol was reviewed by patient organisations including a early phase 1 trials and the PROMISE trial.
Furthermore one of the respondents gave advice on the feasibility of a trial after reviewing the protocol.
20% of respondents said to have experience in reviewing a scientific paper or manuscript on a clinical trial.
7 % of the respondents said to be involved in other ways as a reviewer e.g. by reviewing the final data of a trial and reviewing a national funding scheme.
Please click here for the graph on the involvement of patient organisations as a reviewer in clinical trials.
Please click here for examples of clinical trials and research in which patient organisations have been involved on the level of being a reveiwer,that were described by the survey's respondents
Regional differences in being involved as a reviewer in clinical trials
The survey shows that respondents from North Western Europe are more frequently involved in reviewing a funding request as compared to the other regions. In comparison, respondents from Southern Europe tend to be more often involved in reviewing a clinical trial protocol and respondents from Central Eastern Europe show a higher frequency of reviewing patient information that is to be used in a clinical trial.
Please click below for the overview graph of the involvement per region in clinical trials on all levels.
Overall regions compared
North-Western Europe
Central and Eastern Europe
Southern Europe
Disease-group specific differences in being involved as a reviewer in clinical trials
Respondents that represent rare diseases tend to be more involved in reviewing a funding request.
Respondents that represent common disease patient organisations tend to be more frequently involved in reviewing patient information for the use in clinical trials.
Overall comparing the"common" with the "rare" condition patientorganisations
Patient organisations representing the "common" conditions
Patient organisations representing the "rare" conditions
Please click here for examples of clinical trials and research in which patient organisations have been involved on the level of being a reviewer,that were described by the survey's respondents