▶ Aims. To describe the research needs identified by a group of disable patient-led paediatric organisations, as well as the organisations' knowledge of ongoing studies, participation and financial support in research projects, and funding received and distributed. ▶ Methods. A postal questionnaire was sent to 123 organisations (February 2009). Non responders were solicited up to two times by fax, e-mail, or phone (March, June 2009). ▶ Results. Among the 46 responders (37,4% of those contacted), 52% deal with brain disabilities, 28% with rare diseases, and 20% with other disabilities. Most (87%) declared that there are areas in need of research with respect to therapy, diagnosis, and assistance. Half of the responders stated that they are aware of ongoing studies that would be of interest to patients and that they know of research funding sources in those areas. Many organisations (72%) take part in research projects. Most responders (93%) know the funding sources of their associations, but only 55% provided details (public or private funding). Most responders know the role of ethics committees, but more than one-third does not know that the presence of a lay member is required in every committee by law. ▶ Conclusions. Most organisations report a substantial need for research in different areas. Many organisation take part in research projects, with different levels of involvement. The lack of information highlighted by this survey should be evaluated by other studies to define areas for improvement. The survey findings will be presented to the organisations involved and the feasibility of a collaborative project will be discussed.
|Translated title of the contribution||Does research respond to patients' needs? A survey of disable patient-led paediatric associations|
|Number of pages||9|
|Journal||Ricerca e Pratica|
|Publication status||Published - Jul 2011|
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