Project Summary
This proposed project is for an online course to educate eyecare clinicians on the diagnosis and management of inherited retinal diseases (IRDs) and provide an evidence-based update on emerging treatments.
IRDs comprise a heterogeneous group of eye conditions that cause progressive vision loss throughout adulthood and, in most cases, lead to legal blindness. Until recently, patients with IRDs had no hope of a cure. However, the approval of the world’s first ocular gene therapy in 2017 (Luxturna™) has brought forward a new era of research into treatments for these conditions. Following rapidly are other emerging treatments, such as stem cell transplantation and neuroprotective implants. These possibilities are offering the hope of saving sight in not only IRDs, but also other vision-threatening disorders, such as glaucoma and age-related macular degeneration.
Along with significant advances in IRD research, it’s essential that clinicians are up-to-date with information on diagnosing and managing these conditions. The management of IRDs often warrants a multidisciplinary approach. The team may include ophthalmologists, optometrists, geneticists, occupational therapists, and other providers. Primary eye health practitioners, such as optometrists, are often patients’ first point-of-contact in the healthcare system and play an essential role in coordinating co-management and providing long-term care. The integration of knowledge and sharing of information between primary eye health practitioners and other interdisciplinary team members is critical for providing coordinated, patient-centered care, to optimise health outcomes for people with IRDs.
Eye health practitioners should also be able to advise individuals with IRDs on emerging treatments so that they can make informed and timely decisions on participating in clinical trials. Most IRDs have a limited therapeutic window for preserving visual function. Our recent survey of over 700 individuals with IRDs found that over 60% of respondents indicated they have not obtained any information about gene therapy from their ophthalmologists or allied health professionals. This finding highlights an unmet need to improve the integration of knowledge between clinical care and research.
This unmet need will be addressed in this online course. This course is targeted at primary eyecare providers, particularly optometrists, orthoptists, and ophthalmic nurses. It may also be of interest to ophthalmologists, ophthalmic nurses, orthoptists, occupational therapists, low vision care providers and general practitioners.
Specific learning outcomes for the proposed course are to:
1. Be able to differentiate subtypes of IRDs and understand their key differences, including clinical phenotypes and genetic mutations.
2. Learn key imaging biomarkers for monitoring disease progression, using clinical imaging tools such as optical coherence tomography and fundus autofluorescence.
3. Understand the different aspects of the multidisciplinary approach in the management of IRDs and methods for providing integrated care.
4. Develop an understanding of current and emerging treatments for IRDs, including gene therapy, stem cell therapy, and optogenetics.
Collaborating on this project are international clinicians and researchers with multidisciplinary background (laboratory science, optometry, ophthalmology) and expertise in retinal diseases. This team will bring diverse perspectives on the topics covered and expand their global applications.
Who’s involved?
Lead University: University of Melbourne
Dr Alexis Ceecee Britten-Jones (Lead. Postdoctoral Research Fellow in inherited retinal diseases; optometrist)
A/Prof Lauren Ayton (Principal Research Fellow in vision restoration and inherited retinal diseases; optometrist)
Dr Thomas Edwards (lead researcher in ocular gene therapy; vitreoretinal surgeon)
Partner Universities:
University of Birmingham (Dr Lisa Hill; lead researcher in ocular disease and therapeutics)
University of Auckland (A/Prof Andrea Vincent; lead researcher in inherited retinal diseases and ocular genetics; consultant ophthalmologist)