Listen to this page using ReadSpeaker

ARVO 2015 Highlight: New Research Boosts Prospects for Saving Vision with RdCVF

Dr. SahelAn eye doctor could preserve meaningful vision in people with advanced retinitis pigmentosa (RP) by saving just five percent of their cones, the cells concentrated in the central retina enabling us to read, recognize colors and see in lighted conditions.

That was the impetus for Foundation-funded researchers José Sahel, M.D., and Thierry Léveillard, Ph.D., to search for, and ultimately discover, a cone-saving protein they call rod-derived cone-viability factor, or RdCVF. After years of refinement and testing in animal models, the emerging therapy is about a year and a half from moving into a clinical trial at the Foundation-funded Paris Research Center for the Study of Retinal Degenerative Diseases.

While the two scientists from the Institut de la Vision have been optimistic about the ability of RdCVF to save vision in people, results from a new study, reported at ARVO and published in the journal Cell, have taken their confidence to a new level. By studying RdCVF in mice and chickens, the latter of which have cone-rich retinas, they identified its mechanism of action. In other words, now they know precisely why it works so well.

The researchers found that RdCVF boosts the uptake of energy to the cones. Also, the protein may help regenerate cone outer segments, the protrusions which make vision possible by capturing and processing light, but are often lost in retinal degenerative diseases.

“The mode of action of RdCVF is appealing since it opens a new avenue of research aimed at promoting the re-growth of cone outer segments and restoring lost visual acuity in RP,” says Dr. Léviellard. “It is also an entirely novel neuroprotective mechanism for preserving cones.”

RdCVF will be administered to patients as a gene therapy. A human-engineered virus known as an adeno-associated virus (AAV) will deliver copies of a gene that expresses RdCVF to cones. A single injection of the treatment, made underneath the retina, will likely work for several years.

A key benefit of RdCVF is that it works independent of the mutated gene causing vision loss. While it has been evaluated for several different forms of RP, RdCVF may also be effective for other retinal conditions.

“This new research represents a massive amount of work led by Thierry and provides a valuable elucidation of RdCVF’s mechanism of action,” says Dr. Sahel. “It follows decades of FFB support for Thierry and me, and the advancement of RdCVF toward a human study.”

Pictured, above: Dr. José Sahel. Photo courtesy of the Institut de la Vision.


47 Responses to 'ARVO 2015 Highlight: New Research Boosts Prospects for Saving Vision with RdCVF'

  1. Patrick Wong says:

    Hello Dr
    My name is Patrick Wong from Singapore. I am diagnose with Retinitis Pigmentosa by my eye doctor some 5-6 years ago and I am told they is no cure. I was able to see more than 50% but when come to night it drops. Also in recent months, it seen to worsen. My blind spots allow me to see center and the extreme outer view leaving a ring of black thick circles on both eyes. I also start seeing a black dot in the center.

    Dr, can you advise if there is any way to stop the degeneration or improve my sight.

    Thank you

    Yours sincerely
    Patrick Wong

    • EyeOnTheCure says:

      Dear Patrick,
      There are three major types of retinal disease: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. 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 may also want to try to identify the disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. You also may be able to 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 you identify your disease gene or not, you should consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. 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.

    • Hey i am Vishal from India, and My dad and Uncle have same problems, they are struggling since childhood. Now my dad is 45 year old, and he don’t have good vision in day also.

      But there is no remedy or no cure according to doctors. :(
      Right now he is taking Ayurvedic Medicines to save their Day Vision also.

      But the God will send a new treatment for this… And Patrick Bro; You should not leave your courage (y), Don’t forget your Goal.

      My dad is really a Inspiring Person for Me.. He struggle daily with their disease but i never saw him Like helpless…

      And don’t wry; New treatment will come as soon as possible.

  2. Russ Myers says:

    I was diagnosed with retinatis pigmentosa more than 30 years ago. My condition has progressed quickly over the past year and I have recently had to resign from my job. Any help or advice you can give me would be greatly appreciated. Thank you

  3. Terry Hite says:

    Dr., my wife turns 47 this June and I would do anything to stop this dreaded disorder.
    Kathy was the first known diagnosis of RP within her family with no history to compare to.
    She was maybe 10 when diagnosed and still has enough sight to function in the daylight.
    I would love to get your input by seeing her and see if she may be a quality
    Candidate for any clinical trials to stop or reverse her condition.
    Thank you for your consideration
    Terry and Kathy Hite
    Lexington,SC

    • EyeOnTheCure says:

      As a first step, your wife should consider genetic testing to try and identify the disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. You also may be able to 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
      Your wife should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. 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.

  4. ashim says:

    Hello Dr,

    My mother was diagnosed with RP 7-8 years back and now she has around 40-50% vision.She has major vision problem in the dark or very less light.Please advise if there is any treatment available for this.

    • EyeOnTheCure says:

      Your mother should consider genetic testing to try and identify the disease gene and mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. She may also be able to 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
      Your mother should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. 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.

    • Diane O'Shaughnessy says:

      I have had RP since childhood. At age 70 I have lost most of my peripheral vision and my central vision is poor. Would I be a candidate for a trial?

      • EyeOnTheCure says:

        The clinical trial for RdCVF has not yet begun. However, there are other trials that you might be able to qualify for. The website: http://WWW.CLINICALTRIALS.GOV 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. If you have not done so already, you may also want to try to identify your disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. You also may be able to 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 you identify your disease gene or not, you should consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:
        https://www.myretinatracker.org/ I hope you find this information helpful.

  5. B.SRIDHAR says:

    Hello Dr,

    i am Sridhar from chennai of 56 year age with RP in both eyes.
    is there any cure for this or how to maintain the existing vision without further detoriaration

    • EyeOnTheCure says:

      Dear Sridhar, 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. 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
      If you have not done so already, I highly recommend that you try to identify your disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. Once you have identified the disease gene, you can scan the internet (Google or PubMed) to see what research is being done. If there is a gene therapy clinical trial being conducted on your gene, you will have a high likelihood of qualifying. 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 you identify your disease gene or not, you should consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. 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.

    • lata says:

      Hv you tried ayurvedic treatment? my son aged 42 has been under treatment at Sreedhareeyam Ayurvedic Center, Koothattukulam, Near Kochi for the past 12 years. he has had dramatic improvement in his vision. that is, putting a stop to deterioration and also actual improvement in his vision. you should go and consult them.

  6. D Lloyd says:

    My son will be 29 in a few weeks, he was diagnosed with RP at age 3. I would love for something to be done for him to be able to drive and help support his family more. Thanks.

    • EyeOnTheCure says:

      If your son has not done so already, I highly recommend that he tries to identify his disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. Once the disease gene is identified, one can scan the internet (Google and PubMed) to see what research is being done. If there is a gene therapy clinical trial being conducted on his gene, he will have a high likelihood of qualifying. 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 your son identifies his disease gene or not, he should consider participating in FFB’s “My Retina Tracker”, a free registry that can help him find out about clinical trials that are recruiting for your specific disease. 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.

  7. Eva says:

    Hi
    My husband was diagnosed with RP and is now legally blind. They have told him that his condition affects his cone and rod functioning.
    Would your research be something that could help his condition in the future?
    Any info you can give me is greatly appreciated.

    • EyeOnTheCure says:

      Your husband 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, one 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/

  8. S Rogers says:

    My son was diagnosed with RP a year ago. He is 20 now. He is still correctable to 20/20 vision. He hasn’t been told anything else about his vision. We know there is some vision loss we just haven’t been told how much. He just finished two weeks of Hyperbaric Oxygen Therapy. We are hoping it helped but have not had him re-evaluated yet. Thank you for your research. I would love for him to have something like this to keep him from losing any more of his sight.

  9. Rose says:

    Hi,
    My father and my uncel have Rp.All doctors thought that women in this kind of Rp are career but when I went to clinic for check up,they saw Rp in my eyes.I don’t have any symptom right now but my life are getting worse.could you please tell me any prevention that might be help me. Thank you

    • EyeOnTheCure says:

      Your father and uncle should consider genetic testing to identify the disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. You also may be able to 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 they identify your disease gene or not, they should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help them find out about clinical trials that are recruiting. 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.

  10. Fikri says:

    I am rp patient. See doctor regularly although no cure found yet Praying for the cure

  11. akshay says:

    Hi Dr, my Mom is 45 and the first known diagnosis of RP within her family with no history to compare to. She was maybe 20 when diagnosed and her sight is now degraded to 10 percent where she could barely see. I wish if you could help us with any possible cure , also what steps to be taken to preserve what is left over.

    • EyeOnTheCure says:

      Your mother should consider trying to identify her disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information she can check the medical databases to see what, if any research is being done. She may even be able to 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 she identifies her disease gene or not, she should consider participating in FFB’s “My Retina Tracker”, a free registry that can help her find out about clinical trials that are recruiting for your specific disease. 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.

  12. lata says:

    there is an ayurvedic hospital near kochi, india that specializes in eye care. my son age 42 was diagnosed with RP about 12 years ago. the doctors at sreedhareeyam ayurvedic hospital have been able to stop deterioration and also improve his vision. this is our experience.you could contacting/consulting the doctors there. best of luck

    • Julie says:

      Could you please provide more information about the clinic in India and the treatment used on your son.
      Greatly appreciated.
      Julie

  13. Eileen Bostic says:

    Hello Dr.,
    My daughter is 33 years old she was diagnosis of RP 2 years ago. She has worn glasses since age 16 but was never diagnosis with RP until then. She is a pharmacist and is still able to work, but was told she couldn’t drive anymore. Her central visionis is 20/30 and 20/40. This is a family genetic disorder my grandpa, uncle and cousin had the same problem.
    We would appreciate any help or advise you could give us and if any hope of slowing the process down.
    Thanks So Much

    • EyeOnTheCure says:

      Your daughter 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, one 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 provides information on what the study is about, the requirements for participating and contact information.

  14. nitza pereira says:

    can you please send me any info any cure for my dad he was dignoes with rod cone and ritintis pgmentosa and almost blind

    • EyeOnTheCure says:

      Dear Nitza, Your father may want to consider genetic testing to try and identify the mutant gene responsible for causing his RP. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. Also, if he obtains a molecular diagnosis, he may qualify for gene therapy trials that are taking place right now. 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 your father’s disease gene is identified or not, he should still consider participating in FFB’s “My Retina Tracker”, a free registry that can help him find out about clinical trials that are recruiting for his condition. 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 provides information on what the study is about, the requirements for participating and contact information.

  15. Rahul pathak says:

    Hello Dr.
    My name is Rahul pathak. I was diagosed with retinitise pigmentosa last 8-10 years. My condition has progressed quickly over the past year. Any help or advice you can give would be greatly appreciated.
    THANK YOU.

    • EyeOnTheCure says:

      Dear Rahul, You may want to consider genetic testing to try and identify the mutant gene responsible for causing your RP. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. Also, if you obtain a molecular diagnosis, you may 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 your disease gene is identified or not, you should still consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific condition. 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.

  16. Esther stonaker says:

    Does anyone know if acupunture helps with rp?

  17. Steve says:

    hi I’m 39 I have rp and at the point now falling over things can’t see in the dark it makes you feel stupid.
    Any help would be great it’s not a nice thing to get

    • EyeOnTheCure says:

      You should know that 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. 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 should also 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, one 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.

  18. Diane says:

    Hello Dr.,

    I have a 22 yr old son that was diagnosed 3 yrs ago with RP, but his is more of not seeing in the daytime as opposed to night. He can see a little better at night. I would like to know if there is anybody that can help in slowing the deterioration of his sight or of any recent cure. He cannot see anything during the day, he says it is just a white blur, but a night he can see a bit better.

    thank you

    • EyeOnTheCure says:

      Your son should know that there are three inherited forms of RP: recessive, dominant and X-linked. If he is not sure which type he has, he should ask his ophthalmologist. 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
      Your son 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, your son should 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 for your son 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.

    • sajad says:

      My son age21 is suffering from retinit pegmentosa by brith.I have not left any ston unturned.I did every thing what i could.He has little vision left.Before he will lose lose whole vision.please help me.if there is any treatment please tell me

      • EyeOnTheCure says:

        You should know that 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. 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 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, one 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.

  19. Murtaza says:

    Hi
    I am from Dubai
    And my daughter is suffering from Retinitis pigmentosa she is 3 years old. Kinldy suggest if there is any treatment for here, if yes we will send her all reports till the date.

    My email id is sunotodil@gmail.com
    Contact details: 00971557867806

    • EyeOnTheCure says:

      You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type your daughter has, you should ask your ophthalmologist. 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 should also consider genetic testing to try and identify the mutant gene responsible for causing your daughter’s RP. 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, she 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 entering your daughter’s information 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.

  20. saif ali says:

    i have retina pigmentosa my vission is very poor.is their acure.thanks

  21. Nand Kishore Gupta says:

    I am 77 years old and my vision is totally lost.
    I am a hypertension patient too so if there is any restriction to it , you may please let me know.
    Can you recover complete vision after the surgery or what percent of it?
    Can my retinitis pigmentosa be cured?
    I m from Chandigarh, India.
    Please tell me if there is any treatment to it at
    1997rajatg@gmail.com

Leave a Reply to D Lloyd Cancel reply

Your email address will not be published. Required fields are marked *

*