Patient data: Recognition, evaluation, incorporation and practice

On-demand course

  • Member-in-Training $49
  • Member $79
  • Nonmember $109

Certificate available upon completion of the course.


  • Avril Daly, CEO, Retina International
  • Orla Galvin, PhD, Director of Research Policy, Retina International


Patient and public involvement (PPI) can be viewed as a means of increasing the impact, quality, and relevance of research studies. In what can often be a departure from conventional approaches, PPI describes research that is carried out ‘with’ or ‘by’ people living with sight loss rather than ‘to’, ‘about’ or ‘for’ them. This lived experience and perspective can be embedded at any stage of the research cycle, for example, by setting research priorities, refining project design, advising on study recruitment as well as contributing towards the dissemination of project outputs.

This course will provide practical guidance on why and how people living with sight loss can have a role in the development and execution of benchtop and clinical research studies. There will be a discussion of how patients and their caregivers can bring stakeholders together to address gaps in research, and the unique roles patients can play in prioritizing a research agenda – before and during clinical development. 

Hear Silvia Cerolini, “Through Vicky’s Eyes”, and Allison Galloway, "Eye Love Logan", describe their experiences representing the RDH12 Families advocating and funding a research agenda for many years.

Attendees will be able to submit questions during the session. 

Learning objectives
After attending this course, participants will be able to:

  • Recognize, describe, and discuss what patient data is.
  • Illustrate the importance of Patient-Reported Outcome Measures.
  • Cite strategies to engage patients in your research from planning to execution.


Welcome and introduction

Avril DalyAvril Daly, CEO, Retina International

How the patient can drive research for inherited retinal disease

Todd DurhamTodd Durham, PhD, VP, Clinical & Outcomes Research, Fighting Blindness, Raleigh, NC 

Silvia CeroliniSilvia Cerolini, Founder, Through Vicky’s Eyes, London, England, United Kingdom

 Allison GallowayAllison Galloway, Patient Advocate, Eye Love Logan, Westminster, Colorado

Patient rare eye diseases data at the European level with ERN-EYE

Helene DollfusHelene Dollfus, MD, PhD, Professor, Universite Louis Pasteur, Strasbourg, France 

(10-minute break)

Patient engagement in benchtop research

Laura BradyLaura Brady, PhD, Head of Research, Fighting Blindness, Dublin, Republic of Ireland 

Orla GalvinOrla Galvin, PhD, Director of Research Policy, Retina International, Dublin, Republic of Ireland   

The Power of the Patient

Christina FasserChristina Fasser, President, Retina International, Zurich, Switzerland