[Research promotion by a patient organization : The example of PRO RETINA and it's research foundation]

This article illustrates the development, framework conditions and results of research promotion by the patient self-help organization PRO RETINA Deutschland e. V. and its foundation, with a special focus on patient participation. Instruments of research promotion applied by the patient organization included the articulation and clarification of research needs, cooperation with research institutes on a project level, accompanying of research programs in advisory boards, public acknowledgement of successful researchers, support of patient recruitment for studies, biomaterial banks and registers. As examples for the initiated and supported research work, the isolation of the choroideremia gene, the development of a retinal implant and cooperation on Usher syndrome are described. In 2007 PRO RETINA established its own research foundation as a closely linked but independent organization. This foundation financially supported 52 projects (including PhD grants and small projects), 19 research awards and 3 foundation professorships, with a main focus on the support and encouragement of young scientists. Nowadays, apart from success in research promotion, patient participation also covers drug approval procedures, benefit assessment and decisions on regulations in medical care. The work of PRO RETINA and its foundation demonstrates the potential of self-help organizations for initiation, acceleration and support of patient-oriented medical research.