With 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.
Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. 
As the Foundation's Director, Science Communica- tions, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. 
I have retinitis pigmentosa and live in UK. I would gladly volunteer for any clinical trials
I Am Ready!
how do we get the trial information?
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
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I vision 20/200, I will consider any clinical trial, where can I get that information?
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.
I have retinitis pigmentosa, where do i sign.
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.
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.
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.
I would love to be part of a trial!
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
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.
Thank You to all the great Researchers and Pioneers! Can we get notified if there is research in our city in AZ?
How do we find out where and when there are clinical trials starting?
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.
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.
My brother has said for years he would be willing to participate in any clinical trial for his R.P.
Im interested and have rp
How wonderful – made me smile and wonder. I have not been to New York and my one grhtadaugdner works there, another goes to music school there and my grandson will be taking an internship there for the summer.Wonder if grandma could leave her cottage in the woods and visit the big city
My friend (31) has Usher syndrom, lives in Moscow, Russia. I would like to inlist him for the trial. How would it be possible?
I have RP & I’m willing to volunteer
where do we find more information about participating in trials ? (late onset retinitis pigmentosa)
Interested in info on trial! Adult late onset X linked RP : diagnosed at 64 ; no remaining vision or light at 73:(
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
count me in
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
How do I enrol?
I have retinitis pigmentosa would give it a go for sure!
My age is 38 I am suffering from retinitis pigmentosa . I would like to participate in clinical trials.how would it be possible?
Sign me up, too! I see a lot of volunteers, but no responses. R.I.P. RP!
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.
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.
Thank you for your message Chris.
We would like to point you to a few places on our website that will provide some useful information. Be sure to visit our section on RP:
http://www.blindness.org/index.php?option=com_content&view=article&id=50&Itemid=67
There is a section on this page that discusses research advancements. While there is no cure for RP, much research is being done.
We often report on new research advancements and so we encourage you to check out our RP written articles information
http://www.blindness.org/index.php?option=com_content&view=category&id=65&Itemid=121
We hope you find this information helpful. Please let us know if there is anything else we can help you with.
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.
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
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.
You should first try to obtain a molecular (genetic) diagnosis as the gene may have already been identified. About 50% of all cone-rod dystrophy is caused by mutations in the Stargardt (ABCA4) gene. 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
You 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/
Once you have identified your disease gene, you can go to http://WWW.CLINICALTRIALS.GOV to see what trials you might be able to participate in.
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.
http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. If you query in “retinitis pigmentosa”, you will see approximately 36 trials that are recruiting patients for clinical trials. A few of the trials listed involve the use of stem cells. Here is the link to the search on RP:
http://www.clinicaltrials.gov/ct2/results?term=retinitis+pigmentosa&recr=Open&no_unk=Y
You will need to look at each trial to see whether or not you fit the inclusion and exclusion criteria. Some trials pay for travel and some do not. Each trial should list a phone number where you can call for more information. I hope this helps.
I would like to be a candidate for trail . I live in Amsterdam NY. How can I find out if I am a right canidtate
http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. If you query in “retinitis pigmentosa”, you will see approximately 36 trials that are recruiting patients for clinical trials. A few of the trials listed involve the use of stem cells. Here is the link to the search on RP:
http://www.clinicaltrials.gov/ct2/results?term=retinitis+pigmentosa&recr=Open&no_unk=Y
You will need to look at each trial to see whether or not you fit the inclusion and exclusion criteria. Some trials pay for travel and some do not. Each trial should list a phone number where you can call for more information. I hope this helps.
How can I sign up? I’m very interested in the stem cell trial. Thanks for any help. My email is lancet0717@gmail.com
http://WWW.CLINICALTRIALS.GOV lists most clinical trials taking place in the U.S. If you query in “retinitis pigmentosa”, you will see approximately 37 trials that are recruiting patients for clinical trials. Here is the web link for RP: https://clinicaltrials.gov/ct2/results?term=retinitis+pigmentosa&recr=Open&no_unk=Y
You will need to look at each trial to see whether or not you fit the inclusion and exclusion criteria. Some trials pay for travel and some do not. Each trial should list a phone number where you can call for more information. I hope this helps.
My wife was recently diagnosed with Best disease, are there any trials or options? please let me know
Thank you
The Foundation Fighting Blindness is currently funding Drs. Aguirre, Gusziewicz and Gamm to develop a gene therapy treatment for Best disease. They have already published preliminary data showing that gene therapy can stop disease progression in a dog model. Here is the link: http://www.blindness.org/foundation-news/progress-reported-gene-therapy-development-best-disease. With financial support from people like you, I am hopeful that we can move these studies into human clinical trials.
Thhanks for finally writing about >VISIONS 2014 — Clunical Trials Need Pioneers – Eye on the Cure
<Liked it!
I have 1 eye that is far sided, 1 eye that is near sided, and I’m cross eyed. My vision is pretty poor and have had to wear glasses since I was 2 years old. I’m not 39 and would love to be involved in a trial. The even remote possibility of ever being able to live my life without glasses would be so amazing. I really want to take part in this.
I know others have more sever eyesight issues but I’m hoping that mine are among those in trial also.