patient involvement in research



Observational studies and clinical trials

Patient involvement in research is increasing and patient representatives are engaging with researchers and industry to improve methodology and research outcomes, to give credibility to the results and to acknowledge the fact that, for ethical reasons, patients should have a say in health care and health research when it is expected that decisions in these areas will have an impact on their daily life

Visit for information on studies about Achondroplasia

Visit for information on studies about Osteogenesis imperfecta.

The IMPACT Survey is a joint initiative between the umbrella organisation OIFE, the OI Foundation & the pharma company Mereo BioPharma. The Survey is aimed at capturing and quantifying the real impact OI has on people’s lives to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI. This Survey is for people with OI, and parents/caregivers of children with OI. Visit the Survey website

Visit for information on studies about Camurati Engelmann disease

Visit for information on studies about Pseudoachondroplasia

Visit for information on studies about X-linked hypophosphatemia

Visit for information on studies about Fibrodysplasia Ossificans Progressiva