Hepatic encephalopathy

Genetic and Rare Diseases Information Center (GARD)

Hepatoencephalopathy
Encephalopathy, hepatic

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Hepatic encephalopathy
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Hepatic encephalopathy is a syndrome observed in some patients with cirrhosis. It is defined as a spectrum of neuropsychiatric abnormalities in patients with liver dysfunction, when other known brain disease has been excluded.^[1] Signs and symptoms may be debilitating, and they can begin mildly and gradually, or occur suddenly and severely.^[2] They may include personality or mood changes, intellectual impairment, abnormal movements, a depressed level of consciousness, and other symptoms.^[1]^[2] There are several theories regarding the exact cause, but development of the condition is probably at least partially due to the effect of substances that are toxic to nerve tissue (neurotoxic), which are typically present with liver damage and/or liver disease. Treatment depends upon the severity of mental status changes and upon the certainty of the diagnosis.^[1]

References

David C Wolf. Encephalopathy, Hepatic. eMedicine. August 18, 2010 Available at: http://emedicine.medscape.com/article/186101-overview. Accessed January 24, 2011.
George F. Longstreth. Hepatic encephalopathy. MedlinePlus. October 13, 2009 Available at: http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm. Accessed January 24, 2011.

Questions & Answers (Found 1 Question)

A list of questions from the public on rare and/or genetic diseases that have been answered by the Genetic and Rare Disease Information Center. Click on each question to find the answer.

How was hepatic encephalopathy discovered, and who first described it? Is there a chance of passing this condition along to my children? ( Click here for answer)

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For more information about Hepatic encephalopathy click on the boxes below:

More Detailed Information (Found 6 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. General The Department of Veterans Affairs posts information discussed during a talk on hepatic encephalopathy given at the 2004 Advanced Liver Disease Training Program held in Manhattan, New York, from April 12 to 14, and sponsored by the VA Hepatitis C Resource Center Program and Hepatitis C Program Office. To view the presentation, click on the link. MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information. Medscape Reference 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. The Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information. The National Institute on Alcohol Abuse and Alcoholism (NIAAA) conducts research focused on improving the treatment and prevention of alcoholism and alcohol-related problems to reduce the enormous health, social, and economic consequences of this disease. Click on the link to view information on this topic. PubMed is a searchable database of medical literature and lists journal articles that discuss Hepatic encephalopathy. Click on the link to view a sample search on this topic.

More Detailed Information (Found 6 resources)

Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.

General
- The Department of Veterans Affairs posts information discussed during a talk on hepatic encephalopathy given at the 2004 Advanced Liver Disease Training Program held in Manhattan, New York, from April 12 to 14, and sponsored by the VA Hepatitis C Resource Center Program and Hepatitis C Program Office. To view the presentation, click on the link.
- MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
- Medscape Reference 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.
- The Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information.
- The National Institute on Alcohol Abuse and Alcoholism (NIAAA) conducts research focused on improving the treatment and prevention of alcoholism and alcohol-related problems to reduce the enormous health, social, and economic consequences of this disease. Click on the link to view information on this topic.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Hepatic encephalopathy. Click on the link to view a sample search on this topic.

Organizations (Found 8 resources) Umbrella Organizations \| Social Networking Websites
Groups providing a wide range of services, supportive resources, and information. The Hepatitis C Support Project (HCSP) is a registered non-profit organization founded to address the lack of education, support, and services available at that time for the HCV population. HCSP's mission is to provide unbiased information, support, and advocacy to all communities affected by HCV and HIV/HCV coinfection, including medical providers. To see their Fact Sheet about hepatic encephalopathy, click here. Umbrella Organizations American Association for the Study of Liver Diseases 1001 North Fairfax, Suite 400 Alexandria, VA 22314 Phone: 703–299–9766 Fax: 703–299–9622 Email: aasld@aasld.org Internet: www.aasld.org Genetic Alliance 4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/ Social Networking Websites DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story. Madisons Foundation P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/ 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. RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.

Organizations (Found 8 resources)
Umbrella Organizations | Social Networking Websites

Groups providing a wide range of services, supportive resources, and information.

- The Hepatitis C Support Project (HCSP) is a registered non-profit organization founded to address the lack of education, support, and services available at that time for the HCV population. HCSP's mission is to provide unbiased information, support, and advocacy to all communities affected by HCV and HIV/HCV coinfection, including medical providers. To see their Fact Sheet about hepatic encephalopathy, click here.
Umbrella Organizations
- American Association for the Study of Liver Diseases
  1001 North Fairfax, Suite 400
  Alexandria, VA 22314
  Phone: 703–299–9766
  Fax: 703–299–9622
  Email: aasld@aasld.org
  Internet: www.aasld.org
- Genetic Alliance
  4301 Connecticut Avenue NW
  Suite 404
  Washington, DC 20008-2369
  Telephone: 202-966-5557
  Fax: 202-966-8553
  E-mail: info@geneticalliance.org
  Web site: http://www.geneticalliance.org
- National Organization for Rare Disorders (NORD)
  55 Kenosia Avenue
  PO Box 1968
  Danbury, CT 06813-1968
  Toll-free: 1-800-999-6673 (voicemail only)
  Telephone: 203-744-0100
  TTY: 203-797-9590
  Fax: 203-798-2291
  E-mail: orphan@rarediseases.org
  Web site: http://www.rarediseases.org/
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- Madisons Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: 310-264-0826
  Fax: 310-264-4766
  E-mail: getinfo@madisonsfoundation.org
  Web site: http://www.madisonsfoundation.org/
- 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.
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.

Medical Products (Found 1 resource)

U.S. Food and Drug Administration

The Office of Orphan Products Development (OOPD)

The medications listed in the table below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search all FDA approved drugs, visit Drugs@FDA You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.

Generic Name	Trade Name (Manufacturer Name)	Indication	Resources
Rifaximin	Normix (Salix Pharmaceuticals, Inc.)	Reduction in the risk of overt hepatic encephalopathy (HE) recurrence in patients greater than or equal to 18 years of age.	Drug Information Portal

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. Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more. Parent Resources The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

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.

- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
Parent Resources
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

Scientific Conferences (Found 2 resources) Upcoming Conferences \| Past Conferences
Resources where you can find information on completed and upcoming scientific conferences and programs. Upcoming Conferences RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012 Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: Direct instruction of trainees and new investigators in rare disease research methodology; Development of a reusable curriculum/syllabus on rare disease research methodology; Stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases Past Conferences VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010 Location: Palais Rouge Convention Center, Palermo, Buenos Aires Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.

Scientific Conferences (Found 2 resources)
Upcoming Conferences | Past Conferences

Resources where you can find information on completed and upcoming scientific conferences and programs.

Upcoming Conferences
- RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
  Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
  Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: Direct instruction of trainees and new investigators in rare disease research methodology; Development of a reusable curriculum/syllabus on rare disease research methodology; Stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases
Past Conferences
- VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
  Location: Palais Rouge Convention Center, Palermo, Buenos Aires
  Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.

Clinical Trials & Research (Found 4 resources)
Resources where you may find research studies and clinical trials. ClinicalTrials.gov lists trials that are studying or have studied Hepatic encephalopathy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies. International Society for Hepatic Encephalopathy and Nitrogen Metabolism (ISHEN) is a non-profit organization aimed at promoting scientific and clinical research on nitrogen metabolism and brain disorders associated with liver disease. NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate. Patient Registry ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

Clinical Trials & Research (Found 4 resources)

Resources where you may find research studies and clinical trials.

- ClinicalTrials.gov lists trials that are studying or have studied Hepatic encephalopathy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- International Society for Hepatic Encephalopathy and Nitrogen Metabolism (ISHEN) is a non-profit organization aimed at promoting scientific and clinical research on nitrogen metabolism and brain disorders associated with liver disease.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Patient Registry
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.