Background: PartecipaSalute (‘Participate in Health Care’), developed with the support of a non profit bank foundation, is a project started in September 2003 with the aim to: increase patients’ associations’ involvement in the healthcare debate and in decision-making processes, also in the research field, and solicit medical societies’ attention to patients’ needs regarding both the production of medical information (clinical studies) and the dissemination of information. Regarding prioritizing clinical research, in Italy patients and their associations are left out from the decisionmaking process, so their needs are rarely taken into account in selecting studies’ objectives and end points. Objectives: The PartecipaSalute project decided to follow the example of the James Lind Alliance experience that developed the ‘‘Spazio Parita’’, a patients oriented clinical research group, in 2007. We started organizing a multidisciplinary working group built upon unanswered questions identified by patients and their associations together with scientific community. Methods: To collect data on patients’ priorities and needs about clinical research, we carried out a postal survey: a questionnaire was sent to 147 organizations that represent several different clinical conditions: cancer, AIDS, renal failure, diabetes, Parkinson, rare diseases, etc. Results: Of 147 organizations contacted, 58 answered. According to 44% of responders, clinical research neither answered to clinical questions important for patients nor considered important end points during in the last five years. Topics relevant for clinical research were suggested by patients associations, particularly dealing with psychosocial aspects, epidemiology and risk factors. We are considering to carry out a similar survey targeted to paediatric associations. Conclusions: Results demonstrate that the common idea that patients and their associations demand new therapies above all, in particular drugs, and in general terms ‘technology’, is not correct. In Italy, the research priorities are not discussed with patients’ associations, although some studies show the opportunity to define priority of research shared between doctors and representatives of patients. We are organizing a method to collect unanswered questions defined by citizens and patients through our website, giving evidencebased information from the Cochrane reviews when available.