Conan Donnelly


Conan is Chief Executive of the International Niemann-Pick Disease Registry, a global registry established to collect medical and patient reported data to tell the patient experience. The INPDR facilitate research including epidemiology, natural history and quality of life studies as well as research to evaluate therapies. Conan started working life as a government statistician and moved to work in the Northern Ireland Cancer Registry where he completed a PhD in epidemiology and designed and ran several population health research studies using registry data. He has worked in disease registration for over ten years now and has seen firsthand the importance of patient reported and clinical data in improving survival and patients’ quality of life.