Retinitis pigmentosa
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Retinitis pigmentosa (RP) is the name given to a group of inherited eye diseases that affect the light-sensitive part of the eye (retina). RP causes the breakdown cells in the retina that detect light and help us see. As these cells breakdown and die, people with RP lose their vision. The first sign of RP is typically night blindness. As the condition progresses, affected individuals usually lose their peripheral vision, which is called tunnel vision. There are many different genetic causes of RP. Sometimes RP occurs by itself (isolated RP), and other times it occurs with additional signs and symptoms (syndromic RP). There is no cure for RP, however, there are a few treatment options to slow down the progression of the disease. These options include light avoidance, use of low-vision aids, and vitamin A supplementation.[1]
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- More Information (Found: 11 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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The Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information.
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Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic.
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The National Eye Institute (NEI) was established by Congress in 1968 to protect and prolong the vision of the American people. Click on the link to view information on this topic.
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The National Human Genome Research Institute's (NHGRI) mission encompasses a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. Click on the link to view the information page on this topic.
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eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
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The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and health care organizations representing millions of individuals with genetic conditions. Click on the link to view information on this topic.
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MedlinePlus, a Web site designed by the National Library of Medicine Web site to help you research your health questions, provides more information about this topic. Click on the link to view this information.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Retinitis pigmentosa. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Retinitis pigmentosa. Click on the link to go to PubMed and review citations to these articles.
- Management Guidelines
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GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
- Support Groups (Found: 7 Resources)
Groups providing a wide range of services, supportive resources, and information
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Research & Clinical Trials (Found: 2 Resources)
Resources where you may find research studies and clinical trials
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Orphanet lists clinical trials, research studies, and patient registries enrolling people with this condition. Click on Orphanet to view the list.
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ClinicalTrials.gov lists trials that are studying or have studied Retinitis pigmentosa. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- Services (Found: 2 Resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Testing
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Orphanet lists international laboratories offering diagnostic testing for this condition. Click here and scroll down the page to learn more about the processes of certification, accreditation, and external quality assessment available to these labs. Click on Orphanet to view the list.
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GeneTests lists clinical laboratories offering genetic testing for retinitis pigmentosa. Some do not accept direct patient contact; therefore, patients who are interested in learning more will need to work with a health care provider or a genetic professional. GeneTests also lists laboratories that are conducting research on retinitis pigmentosa. Click on GeneTests to view the list.
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The NLM Gateway allows users to search across multiple resources offered on the National Library of Medicine's Web site. Some of these resources may be duplicated in the list of links above. Click on the link to go to the NLM Gateway, and search by condition name.