What We Do

A core element of Retina International’s work is developing capacity-building resources to educate the patient-led retina community and ensure a common focus; to engage in advocacy campaigns calling for more accessible and high quality patient services around the globe.

Retina International is deeply interested in retinal research, guiding and influencing the course of research through our advocacy work and leading these campaigns to increase investment in research and improving the infrastructures which support it.

Furthermore, Retina International also supports and encourages the foundation of new patient-led organisations, particularly in countries where such societies do not already exist. Retina International assists these emerging organisations as they establish themselves, encouraging and helping them to set clear goals and achieve them, all of which is integral to the growth of a well-informed and unified global patient community.

Advocacy

Advocacy is a fundamental pillar of Retina International’s work. Our mission is to provide timely, relevant and accurate information which educates the patient community about retinal conditions, available therapy options and resources to help people cope with deteriorating vision.

We also supply evidence and data to highlight the urgent need for improving the accessibility of many patient services, including greater access to genetic testing and diagnostic screening, a more appropriate clinical trial process and ultimately, global and equitable access to therapies for retinal dystrophies.

Retina International fosters and supports collaborations between patients, clinicians, researchers, policy makers and industry in the development of these educational resources and awareness campaigns, that will ensure a better quality of life for individuals and families affected by retinal dystrophies. We also encourage our members to use this evidence and our educational resources to guide their own work at a national level.

Research

Degeneration of the retina, a thin layer of tissue at the back of the eye results in many different forms of sight loss. The prevalence of these retinal dystrophies and their severity of onset is highly variable and influenced by many factors, such as their mode of inheritance and environmental influences, which can exacerbate or mitigate this vision loss i.e. diet, smoking.

Retina International recognises the value of understanding the conditions which affect you or your family members. It helps to ensure that you are cognisant of the therapies available for your condition, informed on good lifestyle habits which will support your eye health and are aware of ongoing research and clinical trials hoping to develop treatments, and ultimately cures, for you or your family’s retinal dystrophy.

Our members fund and engage in research all over the world, taking a multi-faceted approach to identifying potential therapies and solutions for retinal dystrophies. This research involves analysing causative genes which cause cells and proteins to malfunction, preparing and analysing new and healthy photoreceptor cells for implantation into the retina, investigating new drugs and developing technology which supports our vision.

Some conditions, such as forms of Age-related Macular Degeneration (AMD) and Diabetes-related Eye Diseases (DEDs) can be successfully treated. For some other rare and genetically inherited conditions called Inherited Retinal Diseases (IRDs), we are still in the early investigative stages for some, while treatments for other IRDs are progressing swiftly and are moving towards human clinical trials.

Gene therapies are designed to treat Inherited Retinal Diseases (IRD) by repairing the abnormal gene. This is achieved by replacing the disease-causing faulty gene with a “normal” and functioning copy into a person’s cells. The most successful method of delivering the new gene is via a gene transporter, called a vector; a harmless virus which has been genetically modified to carry human DNA. These vectors are very specifically programmed to transport the genes into the cells that contain the malfunctioning gene, which is to be replaced.

The eye is an ideal organ for gene therapy as it is easily accessible to administer the gene therapy, the therapeutic effects are simple to measure; improved vision, and the eye is well protected from the body’s immune response, which is particularly beneficial after injection with a viral vector.

As of March 2020, there are many clinical trials ongoing to investigate the safety and efficacy of gene therapies for retinal conditions, such as X-linked Retinitis Pigmentosa (XLRP), Leber Congenital Amaurosis (LCA) and Choroideremia (CHM). Updates on these clinical trials can be found on the clinicaltrials.gov website.

Stem cells are a special cell-type that when under the right conditions, have the remarkable ability to specialise into a variety of specific cell types within the body and replace damaged cells. They are an essential part of the human body’s repair mechanism and because of their unique ability to repair, regenerate and specialise into certain cell types, stem cells offer huge therapeutic potential to improve the sight of people living with visual impairments and blindness.

There are three key stem cell types which are being intensively researched in search for therapies. Adult stem cells are specialised and only give rise to cells of the tissue from which they are derived, embryonic stem cells (ESC) are obtained from young embryos and are capable of differentiating into all cell-types within the body and induced pluripotent stem cells (iPSC) were once adult stem cells, but re-programmed and converted into undifferentiated embryonic stem cells.

The manner in which these cells differentiate and can be subsequently de-differentiated into a less specific cell type is being studied, considering the environmental conditions and changes in gene expression, which influences this cell activity.

Organoids, or tissue structures grown from these stem cells in the lab environment which resemble fully-functional organs in-vivo are being studied. Future research and progress in growing these fully-functional retina organoids will ensure they will be one day transplantable into the human eye as a successful therapeutic option.

Stem cells are not a one-stop, generic cure; this is complex research and while this field of research is quite novel, they hold very real and exciting potential for vision repair in the future.

Retina implant technology is the use of microelectronics and microchip electrodes surgically implanted into the back of the eye (retina) to restore the function of the damaged light-sensitive cells found there.

Also known as a bionic retina, these retina implant devices create artificial vision for people living with advanced retinal conditions where there is extensive or complete photoreceptor degeneration, as with Retinitis Pigmentosa (RP) and Age-related Macular Degeneration (AMD).

These photoreceptor cells respond to light and convert it to an electrical signal which is passed to nerve cells in the eye, and then ultimately to the brain where visual images are formed.

Some challenges still exist which researchers are working to overcome, such as incorporating more sophisticated machine learning technology to improve recognition of faces and objects and make it more convenient for the person using it.

Pharmacotherapy is a field of research focused on developing therapies which target pathways to slow the death of photoreceptor cells, prevent further vision loss and preserve vision. Many of these drugs are repurposed drugs; this means they may already be approved for use in a completely different disease and are being tested for their effectiveness in the eye.

Anti-vascular endothelial growth factor (anti-VEGF) is a very common drug therapy and is used to treat Age-related Macular Degeneration and Diabetes-related Macular Edema. In these conditions, abnormal blood vessel formation occurs at the back of the retina, which subsequently burst and release toxic substances, damaging the photoreceptor cells.

Anti-VEGF treatments are a common focus of research and some, such as Beovu (Brolucizumab) have been approved for use by the FDA and available in all 27 European member states, as well as UK, Iceland, Norway and Liechtenstein to treat neovascular Age-related Macular Degeneration. Many others are under investigation in clinical trials.

The integration of adaptive optics into ophthalmology is a new technique which has the potential revolutionise how we assess our visual systems, as well as diagnose retinal diseases earlier and more accurately than previously possible. Adaptive optics is a non-invasive strategy to improve our current imaging techniques, including fundus photography and optical coherence tomography (OCT).

Research into adaptive optics being used in ophthalmology has been very promising and has helped to overcome ocular aberrations, one of the primary limiting factors of retinal imaging. Ocular aberrations cause light to spread out rather than focus effectively on the retina, resulting in images appearing blurred and fuzzy. Adaptive optics compensates for this, enhancing imaging from fundus photography and OCT to improve detection of an array of common and rare retinal diseases.

Epidemiology, also known as population studies examine individuals from the general population who share a common characteristic, such as a particular health condition. These studies are incredibly important to understand the course of disease in different people and even in different populations to determine how, when and where these diseases occur, as well as identify any correlations that may exist.

Epidemiological studies are commonly used to plan and prepare strategies to help prevent illness, as well as provide evidence-based advice about how to manage the disease in people living with the condition. With regard to retinal diseases, social science studies aim to establish the incidence and prevalence rates of different diseases, as well as understand how these diseases impact on the individuals living with the conditions and their families.

Retina International recently published a paper in Clinical Ophthalmology called The Impact of Inherited Retinal Diseases in the Republic of Ireland (ROI) and the United Kingdom (UK) from a Cost-of-Illness Perspective”. This review article considers the social impacts of living with an inherited retinal degeneration and other burdens endured by the individuals living with these conditions and their families.

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