HIBMSTUDY.NHGRI.NIH.GOV

Clinical Trials Survey System

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. GNE Myopathy also known as Hereditary Inclusion Body Myopathy is a rare hereditary disorder that causes progressive muscle weakness. Manifestations of the disease usually become apparent between 20 and 30 years of age and slowly involve muscles of the arms and legs. Patients may require a wheelchair approximately 10-20 years after the first symptoms appear. GNE myopathy results from mutations in a gene called GNE.

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Clinical Trials Survey System | hibmstudy.nhgri.nih.gov Reviews

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A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. GNE Myopathy also known as Hereditary Inclusion Body Myopathy is a rare hereditary disorder that causes progressive muscle weakness. Manifestations of the disease usually become apparent between 20 and 30 years of age and slowly involve muscles of the arms and legs. Patients may require a wheelchair approximately 10-20 years after the first symptoms appear. GNE myopathy results from mutations in a gene called GNE.

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Clinical Trials Survey System | hibmstudy.nhgri.nih.gov Reviews

https://hibmstudy.nhgri.nih.gov

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. GNE Myopathy also known as Hereditary Inclusion Body Myopathy is a rare hereditary disorder that causes progressive muscle weakness. Manifestations of the disease usually become apparent between 20 and 30 years of age and slowly involve muscles of the arms and legs. Patients may require a wheelchair approximately 10-20 years after the first symptoms appear. GNE myopathy results from mutations in a gene called GNE.

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hibmstudy.nhgri.nih.gov

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Clinical Trials Survey System

https://hibmstudy.nhgri.nih.gov/about.html

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. Who runs this study? This study is a joint project of the NHGRI (National Human Genome Research Institute) http:/ www.genome.gov. And the Therapeutics for Rare and Neglected Diseases (TRND) http:/ trnd.nih.gov/. Program at the National Institutes of Health http:/ www.nih.gov. In Bethesda, Maryland, USA. The Principal Investigator of this study is Dr. Nuria Carrillo. What is this study about? Email Lea Latham lea.lat...

2

Clinical Trials Survey System

https://hibmstudy.nhgri.nih.gov/consent.html

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. This consent form provides information about the research study. A staff member of the research study will be available to answer your questions and provide further explanations. To access the consent form. Adobe PDF Reader. 2011 National Institutes of Health - National Human Genome Research Institute. Health research throughout the lifespan.

3

Clinical Trials Survey System

https://hibmstudy.nhgri.nih.gov/links.html

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. Preparing for NIH Visit. Http:/ www.clinicaltrials.gov/ct2/show/NCT01417533? Http:/ www.clinicaltrials.gov/ct2/show/NCT01634750? Http:/ rarediseases.info.nih.gov/gard/9493/inclusion-body-myopathy-2/more-about-this-disease. Http:/ www.ncats.nih.gov/research/rare-diseases/trnd/trnd.html. Http:/ www.nih.gov/news/health/sep2012/ncats-24.htm. Http:/ www.hibm.org/arm/home. Http:/ www.neuromuscdisease.org/.

4

Clinical Trials Survey System

https://hibmstudy.nhgri.nih.gov/faq.html

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. Where can I get more information about GNE myopathy? Http:/ ghr.nlm.nih.gov/condition/inclusion-body-myopathy-2. Advancement of Research for Myopathies (ARM):. Http:/ www.hibm.org/arm/about hibm:living with hibm. Neuromuscular Disease Foundation (NDF):. Http:/ www.ndf-hibm.org/. Where will I have to go to participate in the study? You will be admitted to the NIH Clinical center for this study. Can I bring a companion?

5

Clinical Trials Survey System

https://hibmstudy.nhgri.nih.gov/medical.html

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. For the purpose of this study, we would ask that you obtain your medical records, including medical notes, blood tests, radiology studies, molecular genetics results and any other records that you consider important. Please send them to us at the below address:. Lea Latham, CRNP. Building 31 Room 3B11. Bethesda, MD 20892. Or by email to:. 2011 National Institutes of Health - National Human Genome Research Institute.

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hibm.org

Run For HIBM [Genetic Diseases, Middle East, HIBM, GNE Myopathy, Nonaka Myopathy, DMRV, Muscle Disease, Dystrophy, Disability,]

http://www.hibm.org/arm/index.php

You are using a browser that is either out of date or not supported. HIBMORG is best viewed using Firefox. Thank you for your attention. How Your Donations Are Used. OC Marathon - May 1st, 2016. Through grass-roots fundraising, we have been able to reach the point of clinical trials - treatments are actually being tested on patients. There is still more work to be done, and every little bit of funding helps, really! With Max Amini at Nessah Synagogue - March 9th, 2016. March 9, 2016. Oct 3, 2015. Oct 25,...

hibm.org

Run For HIBM [Genetic Diseases, Middle East, HIBM, GNE Myopathy, Nonaka Myopathy, DMRV, Muscle Disease, Dystrophy, Disability,]

https://www.hibm.org/arm/home

How Your Donations Are Used. OC Marathon - May 1st, 2016. Through grass-roots fundraising, we have been able to reach the point of clinical trials - treatments are actually being tested on patients. There is still more work to be done, and every little bit of funding helps, really! For more information please visit crowdrise page, https:/ www.crowdrise.com/run-for-hibm-2016/fundraiser/sandradarvish. With Max Amini at Nessah Synagogue - March 9th, 2016. March 9, 2016. Nessah Educational and Cultural Center.

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Sephardic Health Organization for Referral and Education. Thank you for visiting the SHORE website. Please use the links above to find information about Iranian Jewish and Sephardic genetic diseases and how to get screened for these diseases. If you have more questions regarding genetic diseases and screening you may contact a SHORE representative by emailing us at info@shoreforlife.org. 2015 HIBM Advocacy Meeting in New York on January 11. To RSVP click on the following link: RSVP. Note: For each comple...

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hibmstudy.nhgri.nih.gov

Clinical Trials Survey System

A Natural History Study of Patients with GNE Myopathy. Quality of Life Questionnaire. GNE Myopathy also known as Hereditary Inclusion Body Myopathy is a rare hereditary disorder that causes progressive muscle weakness. Manifestations of the disease usually become apparent between 20 and 30 years of age and slowly involve muscles of the arms and legs. Patients may require a wheelchair approximately 10-20 years after the first symptoms appear. GNE myopathy results from mutations in a gene called GNE.

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