Paraplyorganisasjonen for verdens RP-foreninger, Retina International, markerer hvert år den 27. september som Verdens netthinnedag. Årets erklæring gir en generell oversikt over hvor langt forskning og utvikling av behandlingsformer for RP er kommet, og understreker sterkt betydningen av gode pasientregistre for at de kliniske forsøk som er en forutsetning for endelige behandlinger skal kunne gjennomføres.
Les pressemeldingen nedenfor.
PRESS RELEASE WORLD RETINA DAY September 27th, 2014
Passing out of the scientific darkness and into the light of clinical trials
This was the title of an inspiring talk given at the recent Retina International World congress in Paris by distinguished vision scientist and charismatic orator Professor Gerald Chader.
World Retina day will take place on Saturday September 27th 2014. This year’s event marks a time of unprecedented optimism in the global effort to find treatments and cures for Inherited Retinal Diseases such as Retinitis Pigmentosa (RP), Macular Degeneration, Usher Syndrome and allied retinal blinding conditions
WHY IS IT CRITICAL TO FIND TREATMENTS?
Vision impairment resulting from inherited retinal disorders is associated with a severely diminished quality of life. Affected people are less able to perform routine activities of daily living, are less mobile, are more isolated, suffer higher rates of depression, and consequently have a substantially reduced overall quality of life. Impaired vision is a significant risk factor for falls and fractures and the ability to travel independently, often linked with issues of quality of life, becomes challenging and daunting in the presence of vision loss. People with sight loss confront formidable challenges in using computers and harnessing the internet to access information, to communicate, and to pursue their academic and career aspirations.
HOW ARE WE EMERGING FROM THE DARKNESS?
As Professor Chader explained in Paris in June, the first treatments are now emerging in the exciting fields of gene therapy, stem cell therapy, artificial vision and cell replacement therapy.
Reflecting on the last 20 years of progress in understanding retinal disease and the excitement at witnessing the increasing quantity of quality research being published every year, Retina International president Christina Fasser made comparisons with the last time the international patient community gathered in Paris. “Only six genes for inherited retinal diseases had been identified whereas now there are over 250, clinical trials commenced in 2006 and currently there are fifteen clinical trials being undertaken for different forms of retinal disease”.
Without question, medical, surgical, and technological progress in understanding and treating many inherited retinal disorders will deliver treatments and increase personal autonomy for many affected people worldwide in the next few decades.
One treatment strategy that is showing increasing promise is artificial vision. With more than 20 groups worldwide developing various kinds of retinal implants, there are now 2 products that have achieved approval by the regulatory authorities for commercial use. While the vision which electronic implants provide is considerably different from normal vision, almost all
patients have regained light perception (if it was lost) and localization of bright objects. More than half of the patients typically have visual perceptions that are useful in daily life, being able to localize objects such as cups and plates, to see shapes (e.g. trees or persons), street marks (white lines, street lamps, shopping windows, moving cars). A few patients can also recognise letters and combine them into words but reading fluently or recognition of individual faces is not possible. Nevertheless it can be recommended that fully blind RP patients look at these technical possibilities to regain some vision to assess whether the step from fully blind to very low vision meets their individual needs, as both approaches have turned out to have a good safety profile. In the absence of any other possibility of restitution from blindness to very low vision, available to blind patients at present, the status of the development of electronic retinal implants is very exciting and future development is expected that will bring further improvements in term of visual acuity, contrast vision and visual field. This progressive improvement is similar to the development of Cochlear implants where technical developments went from pure noise perception to speech recognition ability within a few years.
RETINA INTERNATIONAL CALLS FOR PATIENT REGISTRIES
On World Retina Day, Retina International, an umbrella group of patient-led organisations concerned with inherited retinal degenerations from all over the world will call on governments to establish patient registries. Without these registries potential treatments and cures can not be further developed. Clinical trials face major financial and legislative difficulties and it must be the task of each country’s government to become involved in the process from proper genetic diagnosis and genotyping through to establishment of registries. If this issue is not addressed now millions of people around the world and future generations may never have access to treatments such as artificial vision.
It has taken the international retinal research community more then thirty years to reach this exciting point. With so many clinical trials ongoing and more approaching this vital stage in their development, patients now have a real hope of a brighter future.
As inherited retinal degenerations mainly affect the working population, treatments options will allow those affected to re-enter the work force and fully contribute where they may otherwise have had to depend on social services.
Millions of adults and children are waiting for treatment for retinal inherited diseases and with treatment options becoming a reality the time for action is now.
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