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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Cone-rod dystrophy


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Your Question

I 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?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might cone-rod dystrophy be treated?

Currently, there is no therapy that stops the evolution of cone-rod dystrophy or restores vision. There are a few treatment options, such as light avoidance and the use of low-vision aids that may help to slow down the degenerative process. It is important that people with cone-rod dystrophy recieve support and resources to help them cope with the social and psychological impact of vision loss.[1]
Last updated: 6/2/2011

Are there any research studies or clinical trials investigating treatments for cone-rod dystrophies?

We are not aware of clinical trials enrolling people with cone-rod dystrophy that is investigating new therapies at this time. There are however numerous (over 200) research studies that aim to better understand hereditary retinal degenerations. Knowledge from these research studies is expected to help in developing novel therapies for retinal degenerative diseases.
 
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
Toll-free: 1-800-411-1222
Fax: 301-480-9793
E-mail: prpl@mail.cc.nih.gov
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.
http://clinicaltrials.gov/ct2/info/understand

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.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8

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.
http://projectreporter.nih.gov/reporter.cfm?icde

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 

Last updated: 6/3/2011

References