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Donated Eyes Help Researchers Better Understand Retinal Diseases

a retina affected by RPMany people with retinal conditions such as retinitis pigmentosa (RP) and age-related macular degeneration don’t think they can donate their eyes after they’ve passed away. They can’t imagine anyone would want eyes that didn’t work well. But in reality, affected eyes are in big demand.

“Those eyes are exactly what we need for research to better understand why these conditions occur,” says Meghan Marino, M.S., L.G.C., a genetic counselor at Cole Eye Institute, Cleveland Clinic, which maintains the largest collection of donor eyes affected by retinal diseases in the United States. The laboratory currently has more than 1,300 pairs.

Among her many roles, Marino works with patients, families and 110 eye banks nationwide to prepare for and process eye donations. On average, she coordinates the collection of 30 pairs annually. Marino is on-call 24 hours a day, seven days a week, ready to handle an incoming case.

“Meghan acts as the hub. Working with the doctors and families, she does a great job managing the process,” says Joe Hollyfield, Ph.D., who is the Llura and Gordon Gund Professor of Ophthalmology Research and chairs the Ophthalmic Research Department at Cole. “When someone has passed away, we have to move quickly.”

Dr. Hollyfield and his lab make tissues available to investigators around the world who are performing studies relevant to retinal diseases. For example, a team at the National Eye Institute (NEI) recently used tissues from Cole in a study which determined that trash-collecting cells in the retina known as microglia can go awry in people with RP. They accelerate vision loss by capturing and consuming rods, the photoreceptors that provide night and peripheral vision.

“These findings are important because they suggest that microglia may provide a target for entirely new therapeutic strategies aimed at halting blinding eye diseases of the retina,” says Paul A. Sieving, M.D., Ph.D., director at the NEI.

Genetically characterizing eye tissues—determining which mutated gene caused the disease—is an important part of the process after a donation is made. Stephanie Hagstrom, Ph.D., a genetic researcher, leads that effort at Cole. She’s currently working on a donation from a child who had succumbed to Batten disease, a severe condition that disrupts the ability of cells throughout the body, including the retina, to dispose of wastes.

“By understanding how the genetic mutation led to vision loss in a patient, we can get a clearer target for potential treatments,” says Dr. Hagstrom. “And a human example of the disease will provide invaluable information on this correlation that we can’t get from an animal model.”

If you are interested in registering to become a retinal-disease eye donor, you can download a registration form from the FFB website. (Note: the Foundation’s eye donor program closed as of June 1, 2016.)

Anyone with questions about the donation process may contact Meghan Marino at marinom2@ccf.org. She’ll also help you find a genetic counselor in your region, if you have other, non-donation questions related to your retinal condition.

Pictured, above: The back half of a donated eye affected by retinitis pigmentosa. The dark coloring on the inside wall of the eye (the retina) is known as bone spicule pigmentation and indicates significant degeneration.


5 Responses to 'Donated Eyes Help Researchers Better Understand Retinal Diseases'

  1. nitin dhakate says:

    please forward details of treatment fo RP cure

    • EyeOnTheCure says:

      There are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. The fact that both you and your oldest kids have the disease indicates that it could be of the “dominant” Or the “X-linked” form. For information on inheritance types, please see the following web link to download a PDF document on inheritance: http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
      You and your affected children should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document: http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
      Whether the disease gene is identified or not, you should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. I hope you find this information helpful. Please let me know if there is anything else I can help you with.

      • CLARENCE BROOKSHIRE says:

        I HAVE BEEN TO A LOT OF DOCTORS WITH MY EYES AND THE DOCTOR IN ATLANTA,GA. CHECKED MY EYES AND THEN HE CHECKED MY DAUGHTERS EYES AND HE SAID SHE WAS ALRIGHT BUT I HAD (AMD ) IN MY EYES, I HAVE 3 THAT I GO TO HERE IN DALTON, GEORGIA, DR. WILLIIAM BLACKMAN, RETIRING , TURN ME OVER TO DR. O,BOYLES WHICH HE OPERATED ON MY EYES, I HAVE HAD 12 SHHOTS IN THE LEFT EYE BUT DONE NO GOOD, THEN I WENT TO A LOW VISION DOCTOR IN CHATTANOOGS,TN. AND HE TOLE ME HE COULFN’T GET A READING WELL ENOUGHT TO MAKE ME A PAIR OF GLASSES, THERES A DOCTOR AT THE INDYANA RETNIA CENTER THAT TOLD ME HE COULD HELP ME IF I WOULD COME UP THERE, THEN ANOTHER DOCTOR INGERMANY TOLD ME THAT IF I CAME THERE OR GOT MY LOCAL DOCTOR TO HAVE MY BLOOD SCREEEND THEN THEY CAN REMOVE THE CHELTEROL FROM MY BLOOD AND THAT WOULE HELP ME SEE A LOT BETTER, MY DOCTOR HAD RETIRED, I HAVE TAKEN ALL THE SHOTS THAT THEY ALLOW IN THE EYE, AND I CANT MAKE THE TRIPS BY MY SELF TO SEEE THE DOCTORS THAT SAID THEY COULD HELP ME, WHERE DO I GO FROM HERE.???, THE RETNIA OF MY RIGHT EYE IS ALREADY GONE AND I HAVE BEEN ON MY DOCTOR TO KEEP CHECKING WITH EMORY EYE CARE CENTER IN ATLANTA,GA. TO SEE IF THEY HAD FOUND OUT ANYTHING ABOUT THE IMPLANT OF THE RETNIA I HAVE HEARD THEY HAVE BEEN WORKING ON, I DO BELIEAVE THAT THE CHELESTROL HAS A LOT TO DO WITH THE ( A.M.D.)MY FATHER WAS THE SAME WAY BEFORE HE DIED IN 2001, HE LIVED TO BE 94 YRS OF AGE, I UNDERSTAND WHAT HE WAS TRYING TO TELL ME WHEN HE TOLD ME HE COULDN’T SEE THINGS FOR THATS WHAT I AM GOING THROUGH TODAY, I HAVE FAITH AND HOPE IN OUR LORD AND SAVIOR JESUS CHRIST THAT HE WILL AND CAN HEAL ME BEFORE I LEAVE THIS EARTH, PHILILINES ,CHAP, 4, VERSE, 13, ( I CAN DO ALL THINGS THROUGH CHRIST WHICH STRENGTHETH ME, ) THANKS A LOT.

    • kathy mclain says:

      can a living person donate one of their eyes to grandson that has retinitis pigmentosis,would it help him,and can I donate while I am living?

      • Dr. Tim Schoen says:

        Dear Kathy, You can not donate any organs (except a single kidney) while you are alive. Even if you could donate one of your eyes to your grandson, who has RP, we do not yet have the technology to re-connect the optic nerve, which is part of the central nervous system. If you would like to donate your eyes to research, or, possibly for sight-saving cornea donation, you may do so through Donate Life America. Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye, and tissue donation. You can register as a donor via their website – http://www.donatelife.net.

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