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Identifying the Needs for Patients Partnering in Clinical Research

Coordinator: Cor OOSTERWIJK
Project Number: 201720
EC contribution: € 905,177.00
Project website:

The aim of this 3-year Coordination Action will be to identify the patients’ needs for partnership in the clinical trials context. Moreover, this project will lead to both a well-organized and sustainable communication platform and guidelines to enable the mutual beneficial interactions between patients and clinical trials professionals. This aim will be realized through:

  1. Interviews, addressing patients (-organizations) that will identify preliminary needs in the clinical trials context from a patients’ perspective. These data are complemented with literature reviews and descriptions of best practices. The combined outcomes will be accessable on a centralized webbased database.
  2. Subsequent workshops addressing patients (and patient organizations), researchers and scientists, biopharmaceutical companies, regulators and other stakeholders in the clinical trials context. In these workshops, the conclusions from the interviews, literature studies and best practices will be challenged to draw ‘European’ viewpoints and consensus. On the specific website, attendees will be able to consult the outcomes from both the investigational phase and previous workshops.
  3. The establishment of the European Network of Patients partnering for Clinical Research (EN-PCR). Initially, EN-PCR will be responsible for addressing the high priority issues in this project: paediatric clinical trials, patient registries and biobanks, the Innovative Medicines Initiative (IMI) and ethical issues. Later on, EN-PCR will guarantee the sustainability of this project, being a permanent structure with a bi-directional purpose, both empowering patients and functioning as a one-stop shop for academic and biopharmaceutical research.
  4. Further dissemination of the project results will be achieved by a Patient Guide for patient organizations, an Investigator Guide for organizers and sponsors of clinical trials, a List of Recommendations for regulators and a thematic website.

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