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Being involved as an information provider in clinical trials

Most Patient organisations primary task is providing their members with a range of disease specific information.

In this survey we used the following definition for disease specific information:
Disease specific information is the information that only a patient organisation can provide. This information is based on the combined personal experiences of their organisation’s members on dealing with their condition and it’s treatment on a daily basis.

PatientPartner believes that this disease specific information, when shared and used in a just manner, could be of vital importance for clinical researchers and members of pharmaceutical industry who are developing the therapies of the future.
To identify in what way patient organisations are actively involved as an information provider in clinical trials we asked our respondents the following question:

Is (Has) your patient organisation (been) involved in a clinical trial as an information provider?

Overall half of all respondents have experience with being involved as an information provider.
More in detail; when patient organisations were asked if and how they were involved in providing information on or in clinical trials, 65% of the respondents said that they supplied information to patients on the possibilities of taking part in a clinical trial.
A further description showed that patient organisations inform their members by e.g. 
 “By providing case studies and passing on research details to our membership for them to decide on participation”
We broker between the researcher and the patient whenever a research subjects are needed”.

In the last case the patient organisation in question commented that they do not receive feedback on their brokering activities and therefore do not know how many people have been recruited as a result of their actions. Publishing a call for participation in a clinical trial, either in a newsletter or the organisation’s website seems to be the most common route in which respondents lend a helping hand in recruitment.

Secondly, 49% of the respondents supply disease specific information e.g. “our organisation has been used for studies regarding conditions of living after transplantation”.

37 % of respondents said to supply demographic and or other characteristic information on the members of their organisation e.g.’ we were asked to give information on numbers, pathology etc.” or e.g. “we provided all the data about the basic demographics”.

21 % of all respondents said to be involved in other ways. Detailed descriptions varied from translating research articles into another language, creating an information booklet on taking part in a trial, being involved in supplying information for the marketing of the trial results and supplying information on the impact of the trial proceedings on patients and families to clinical researchers.

Please click here for the graph of the involvement of patient organisations 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 an information provider,that were described by the survey's respondents


Regional differences in being involved as a information provider in clinical trials
Except for a higher frequency in which respondents from Southern Europe provide characteristic and /or demographic information on their members for the use in the clinical trial the survey showed no differences between the different European regions.

Please click below for the overview graph of the involvement as information provider per region in clinical trials .

Overall regions compared

North-Western Europe

Central and Eastern Europe

Southern Europe


Disease-group specific differences in being involved as a information provider in clinical trials
The survey showed no difference in the frequency in which patient organisations representing rare or common diseases are actively involved as an information provider in clinical trials.

Overall comparing the"common" with the "rare" condition patientorganisations

Patient organisations representing the "common" conditions

Patient organisations representing the "rare" conditions

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