Romano-Ward syndrome
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Romano-Ward syndrome is the most common form of inherited long QT syndrome. Symptoms include arrhythmia, fainting, cardiac arrest, and sudden death. There are six different types of this syndrome, long QT 1 through 6. Each type is caused by a change in a different gene. The most prevalent form of long QT syndrome is long QT type 1. Long QT type 1 is caused by changes in the KCNQ1 gene. Romano-Ward syndrome is inherited in an autosomal dominant fashion.[0]
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- More Information (Found: 9 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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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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MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
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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 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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Romano-Ward syndrome. Click on the link to go to OMIM and review these resources.
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PubMed lists journal articles that discuss Romano-Ward syndrome. Click on the link to go to PubMed and review citations to these articles.
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Genetics Home Reference (GHR) contains a condition summary on Romano-Ward syndrome. Click on the link to go to GHR and review this summary.
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The Madisons Foundation has developed an information page on Romano-Ward syndrome. Click on Madisons Foundation to view the page.
- 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: 8 Resources)
Groups providing a wide range of services, supportive resources, and information
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- Disease-Specific Organizations
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Cardiac Arrhythmias Research and Education Foundation, Inc.
26425 NE Allen Street #103
P.O. Box 369
Duvall, WA 98019
Phone: 425-788-1987
Web site: http://www.longqt.org/
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Sudden Arrhythmia Death Syndromes Foundation
508 E South Temple #20
Salt Lake City, UT 84102
801-531-0937
Web site: http://www.sads.org
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MUMS National Parent to Parent Network puts parents in touch with other parents who have children with this condition or similar symptoms.
MUMS National Parent to Parent Network
150 Custer Court
Green Bay, Wisconsin 54301-1243
Toll-free: 877-336-5333 (Parents only please)
Telephone: 920-336-5333
Fax: 1-920-339-0995
E-mail: mums@netnet.net
Web site: http://www.netnet.net/mums/
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QT Syndrome.ch
Frequently Asked Questions: http://www.qtsyndrome.ch/faq.html
E-mail: info@qtsyndrome.ch
Web site: http://www.qtsyndrome.ch/
- Live Chat
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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: 3 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 Romano-Ward syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
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GeneTests lists research laboratories offering research testing for this condition. 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. Click on GeneTests and select "Research" to view the list.
- Services (Found: 3 Resources)
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- 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 clinical testing for this condition. 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. Click on GeneTests and select "Testing" to view the list.
- Genetic Services
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We recommend that you discuss this information and your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
* GeneClinics - A searchable directory of US and international genetics and prenatal diagnosis clinics. To locate genetics clinics in the United States, go to the following link and click on 'Clinic Directory' to find a genetic service close to you.
* ResourceLink - A database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty. Hosted by the National Society of Genetic Counselors.
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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.