ProQR Talks episode #2 “Why is the patient perspective in research important?”

ProQR Talks episode #2 “Why is the patient perspective in research important?” featuring Francesca Diodati & Laura Brady, hosted by Andy Bolan. Recorded in May, 2020. These series of online talks aim to breakdown some of the harder topics we tackle in healthcare. We will do this by bringing together some of the best speakers from across the inherited retinal community. The talks are hosted by Andy Bolan, who is Associate Director, Patient & Medical Community Engagement at ProQR Therapeutics. In this episode we discuss the crucial role of the patient perspective in research and how it really makes an impact from protocol development to clinical trial participation. Both Francesca and Laura bring their own perspectives to the virtual discussion. Francesca is a avid information specialist and Laura is a passionate patient advocate. Both bridge the research and patient community worlds, driving forward the importance of education and awareness in all stages of the clinical development process. Francesca based in Parma, Italy, majored in simultaneous interpreting, but has been working at the University Hospital of Parma for 20 years, 15 of which have been in the Research and Innovation Unit. Living with the genetic eye condition Leber Congenital Amaurosis Type 10, she has a Master’s in research methodology, and works as an information specialist, contributing to the writing of study protocols and scientific publications. Laura Brady is the Head of Research at Fighting Blindness Ireland, she completed a degree in Biochemistry at Trinity College Dublin followed by a PhD in Neuroscience. She is currently a Board of Director of the Health Research Charities Ireland. Laura works closely with the clinical and academic community as part of the Target 5000 programme, which provides a clinical and genetic diagnosis to everyone in Ireland with an inherited retinal degeneration. ProQR is a proud partner of Fighting Blindness Ireland, and more information can be found here: https://www.fightingblindness.ie/ This episode is also available on SoundCloud:   / proqr-talks-episode-2-why-is-the-patient-p...   ProQR Therapeutics is biotech company that develops RNA therapies for inherited retinal diseases, with a high need for new medicines, like Leber's congenital amaurosis, Usher syndrome and autosomal dominant retinitis pigmentosa. Learn more on https://www.proqr.com/