Your QuestionI have cone-rod dystrophy. I have looked all over the internet for answers about my condition. Do you have information about treatments or possible future treatments? Are there any studies or trials that are being done that I might be able to take part in?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
The following trial seeks to better understand the cause of vision loss in people with cone-rod dystrophy as well as other retinal degenerative diseases. Knowledge gained from the trial could be helpful in developing new treatments in the future. Click on the title and review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more.
Retinal Imaging in Patients With Inherited Retinal Degenerations
You can search ClinicalTrials.gov for regular updates. The National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies.
You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine if you are eligible for any clinical trials.
Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
Research studies involving retinal degenerative diseases can be found through the RePORTER database. RePORTER provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH). Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link below. We suggest you start by using either "hereditary retinal degeneration" as your search criteria.
To give you an idea of the types of studies you will find, we have listed some of the study titles below. Click on the titles to learn more.
MODELS FOR THERAPY OF HEREDITARY RETINAL DEGENERATIONS
VISUAL DYSFUNCTION IN RETINAL DEGENERATIONS
DISPOSABLE INSTRUMENT FOR BROADER PATIENT ACCESS TO VISION RESTORATION THERAPY
- C. Hamel. Cone rod dystrophy. Orphanet. February 2007; http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=1872. Accessed 5/22/2011.