28th May 2013

“The European Patients’ Forum (EPF) is pleased to join the All Trials campaign. Since the beginning of our involvement with EU the clinical trials legislation, EPF has called for the publication of all results of all clinical trials in a timely manner, regardless of the outcomes. Ensuring that after a research project finishes, the results are promptly published is, according to our members, as important as the approval of a trial in the first place…

“Any results – even of trials that “failed” or produced unexpected or inconclusive outcomes – add to the totality of the evidence base on therapies, and can help target future research to where it is needed” explained Nicola Bedlington, EPF Executive Director

Patients are increasingly becoming active participants in their own care. Patient involvement is recognised as a vital element to ensure the future sustainability of European healthcare systems; nevertheless in practice there is wide divergence across the EU in the level of patient involvement. In order to implement patient-centred care and empower patients to make fully informed decisions in partnership with their health professionals, it is vital that both clinicians and patients have access to all the relevant information needed to make those decisions.

EPF further acknowledges the benefits of sharing raw data from clinical trials to enable researchers to revisit and reanalyse these data. This is in the interest of good science, patients, and the public. However, the sharing of patient-level data is a complex issue which requires thorough reflection involving all the stakeholder groups to consider the implications and potential consequences of data sharing. EPF therefore welcomes the recent initiative by the European Medicines Agency, to open a public discussion on how to best share data from clinical trials. We are committed to participating in public debates at the European level and will undertake further work with our membership in order to identify solutions that serve both scientific and public interests, while affording appropriate protections to trial participants.”

For more details please see EPF’s position statement on clinical trials.


The European Patients’ Forum (EPF) was founded in 2003 to ensure that the patients’ community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU.

EPF currently represents 61 member organisations – which are chronic disease specific patient organisations working at European level, and national coalitions of patients organisations. EPF reflects the voice of an estimated 150 million patients affected by various diseases throughout Europe.

EPF’s vision for the future is that all patients with chronic and/or lifelong conditions in the EU have access to high quality, patient-centred equitable health and social care.

The EPF strategic goals focus on areas such as health literacy, healthcare, patients’ involvement, patients’ empowerment, sustainable patients’ organisations and health discrimination.