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VISIONS 2014 — Clinical Trials Need Pioneers

Drs. Shannon Boye and Jacque DuncanWith about 20 clinical trials underway for retinal degenerative diseases, and many more ready to launch soon, the buzz about signing up for them has never been louder. When it comes to human studies for potential treatments and cures, everybody wants in.

At the VISIONS 2014 session titled “Clinical Trials: Am I Ready?” Christine Kay, M.D., Shannon Boye, Ph.D., and Jacque Duncan, M.D., reviewed the factors that help determine whether someone will qualify for a clinical trial. A person’s genetic profile, retinal condition, visual ability, age and residence are all key characteristics that clinical researchers consider when selecting participants. The investigators also noted that finding an adequate number of participants for the studies is often challenging.

But Dr. Duncan, the new chairman of the Foundation’s Scientific Advisory Board, cautioned that participation in a human study is not a fast track to treatment. “If we knew the therapy was going to be safe and effective, we wouldn’t be doing the trial,” she said during her closing remarks.

However, Dr. Duncan explained, patient participation is essential to gaining regulatory approval for therapies so everyone can get access to them. “People who participate in clinical trials are absolutely critical to pushing the research forward,” she said to an audience of more than 100 attendees. “You are pioneers who are going to help us get to the point where we can make a difference for the future. We can’t move treatments into the clinic without you.”

Considering the rousing applause she received for her insights, there are plenty of FFB member-pioneers ready to blaze the retinal-research trail.

Pictured, above: Drs. Shannon Boye (left) and Jacque Duncan. 


39 Responses to 'VISIONS 2014 — Clinical Trials Need Pioneers'

  1. Glynis says:

    I have retinitis pigmentosa and live in UK. I would gladly volunteer for any clinical trials

  2. Roy A. Meza says:

    I Am Ready!

  3. Brenda West says:

    how do we get the trial information?

    • EyeOnTheCure says:

      Brenda, Thanks for your comment. Are you interested in being a volunteer for a clinical trial study?

      If so, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed

  4. John says:

    I think this is certainly very substantial data for me personally. And i am thankful mastering ones write-up. On the other hand desire to affirmation about handful of standard challenges, The site design and style is perfect, your posts is absolutely wonderful : N. Great exercise, kind regards

  5. Neng says:

    I vision 20/200, I will consider any clinical trial, where can I get that information?

    • EyeOnTheCure says:

      Thanks for your comment Neng. Are you interested in being a volunteer for a clinical trial study?

      If so, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  6. Nancy Roy says:

    I have retinitis pigmentosa, where do i sign.

  7. Christopher Dean says:

    I am 35 years old and was diagnosed with Choroideremia approximately 20 years ago. I would like information to see if I would be interested in getting information on being part of a trial.

    • EyeOnTheCure says:

      Thanks for your comment Christopher. Are you interested in being a volunteer for a clinical trial study?

      If so, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  8. Sue Ball says:

    I am 70 years old and live in Gilroy, CA. I, as well as several family members, am affected with a dominant form of Stargardts. Love to participate in research.

  9. Dawn Bartolone says:

    I would love to be part of a trial!

  10. Maile says:

    I have made aggressively tried to get a Dr to consider me for a clinical trial but have been blown off repeatedly. They seem to wait until people are useless. I’m trying to avoid getting to that point. I’m 42 and not driving and lost my son to the same gene that caused my RP. I’ve been through enough. Help

    • EyeOnTheCure says:

      Thanks for your comment Maile. Are you interested in being a volunteer for a clinical trial study?

      If so, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  11. FLAWRA says:

    Thank You to all the great Researchers and Pioneers! Can we get notified if there is research in our city in AZ?

  12. Kandy McDonald says:

    How do we find out where and when there are clinical trials starting?

    • EyeOnTheCure says:

      Kandy, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  13. Becky Williamson says:

    My son has recently been diagnosed with x linked retinoschisis. We would definitely be interested in clinical trials, or even just have more info about the condition. We live in the UK.

  14. Debbie says:

    My brother has said for years he would be willing to participate in any clinical trial for his R.P.

  15. Brian blazier says:

    Im interested and have rp

  16. Yulia says:

    My friend (31) has Usher syndrom, lives in Moscow, Russia. I would like to inlist him for the trial. How would it be possible?

  17. Jennifer croft says:

    I have RP & I’m willing to volunteer

  18. Kerwin Davis says:

    where do we find more information about participating in trials ? (late onset retinitis pigmentosa)

  19. Joseph Palassie says:

    Interested in info on trial! Adult late onset X linked RP : diagnosed at 64 ; no remaining vision or light at 73:(

  20. Kimberly Hornbeck says:

    I was diagnosed with Stargardts in 82, I am now 50. Acuity is 20/400 each eye. Also have cone rod dystrophy. Please let us know how to sign up! Live in Southern NJ

  21. claire kennedy says:

    count me in

  22. Fayne Ely says:

    I phave macular degeneration and I participated in the trials back in the 90 s which wee later approved would be glad to help again

  23. Regina Sorensen says:

    How do I enrol?
    I have retinitis pigmentosa would give it a go for sure!

  24. prashanth says:

    My age is 38 I am suffering from retinitis pigmentosa . I would like to participate in clinical trials.how would it be possible?

  25. Marc Della Costa says:

    Sign me up, too! I see a lot of volunteers, but no responses. R.I.P. RP!

    • EyeOnTheCure says:

      For more information on trials, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  26. chris bloom says:

    how do i get more information i am 43 and have been dealing with the effects of rp for some time now it finally sounds like there may be hope i also have an aunt and uncle dealing with this condition.

  27. Edwina Crocco says:

    I have been diagnosed with macular degeneration and beginning stages of glaucoma. If any studies are being done in the Chicago, IL area, I am most interested in participating.

  28. Dave says:

    Just diagnosed with stargardt disease at age 52. No vision loss yet from disease. Very interested in clinical trials. I live on Vancouver Island, B.C., Canada

  29. CAREY says:

    My name is Carey. I am 34 years old. I have always had visual problems but no diagnosis. I also have macular degeneration. Con/rod dystrophy is my problem and extreme eye sensitivity to light. All light. I would be willing to participate in the clinical trial group.
    I live in SC.

  30. Jordan says:

    I have had RP since 12 or 13. I am 27 now. Information on Trials would be great, and I would be interested in signing up.

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