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Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • JDM
  • Juvenile myositis
  • Juvenile polymyositis
  • JPM
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Home > Genetic & Rare Diseases Information Center (GARD) > Juvenile dermatomyositis



Juvenile dermatomyositis
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Juvenile dermatomyositis has some similarities to adult dermatomyositis and polymyositis. It typically affects children ages 2 to 15 years, with symptoms that include weakness of the muscles close to the trunk of the body, inflammation, edema, muscle pain, fatigue, skin rashes, abdominal pain, fever, and contractures. Children with juvenile dermatomyositis may have difficulty swallowing and breathing, and the heart may also be affected.  About 20 to 30 percent of children with juvenile dermatomyositis develop calcium deposits in the soft tissue. Affected children may not show higher than normal levels of the muscle enzyme creatine kinase in their blood but have higher than normal levels of other muscle enzymes.[1]


References
  1. Inflammatory Myopathies Fact Sheet. National Institute of Neurological Disorders and Stroke (NINDS). February 2011 Available at: http://www.ninds.nih.gov/disorders/inflammatory_myopathies/detail_inflammatory_myopathies.htm. Accessed May 31, 2011.
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For more information about Juvenile dermatomyositis click on the boxes below:
More Detailed Information Organizations Services Scientific Conferences Clinical Trials & Research
 General | Other Links
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

    • MedlinePlus, the National Library of Medicine Web site designed to help you research your health questions, provides general information on myositis. Click on the link to view this information.
    • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
    • The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Juvenile dermatomyositis. Click on the link to go to OMIM and review these resources.
    • 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.
    • PubMed is a searchable database of medical literature and lists journal articles that discuss Juvenile dermatomyositis. Click on the link to view a sample search on this topic.
  • Other Links

 Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites
Organizations (Found 7 resources)
Groups providing a wide range of services, supportive resources, and information.

  • Disease-Specific Organizations

  • Umbrella Organizations

  • 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.
 
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.
 Upcoming Conferences | Past Conferences
Scientific Conferences (Found 5 resources)
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

    • Pediatric Rheumatology Research Annual Scientific Meeting, April 20, 2012 - April 22, 2012
      Location: TBA
      Description: The specific objectives of this scientific meeting are: 1. To advance our understanding of the pathogenesis (immune, genetic, epigenetic and inflammatory), epidemiology, and current and innovative therapeutic approaches in pediatric rheumatic diseases 2. To provide a forum for development of collaborations and mentoring for the pediatric rheumatology research community with special attention to young investigators. 3. To provide training and education in major areas relevant to pediatric rheumatology research and the conduct of clinical research 4. To integrate pediatric rheumatology research coordinators into the advancement of the CARRA research strategy and the development of specific research projects by incorporating representatives of the CARRA Research Coordinator Network into all CARRA research working groups
    • Treatment Strategies for Neuromuscular Diseases: The Challenge of Recruitment, September 20, 2010 - September 22, 2010
      Location: Beaver Hollow Conference Center, Java Center, NY
    • 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.
    • Workshop on Inflammatory Myopathy, April 5, 2000 - April 6, 2000
      Location: NIH Campus, Bethesda, MD
      Description: The goal of this workshop was to provide a forum for researchers in the areas of myositis, muscle biology, and immunology to review the current status of research on inflammatory myopathies and explore potential new avenues of research.
 
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 Juvenile dermatomyositis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
    • The U.S. 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. There is a study titled Study and Treatment of Inflammatory Muscle Diseases which may be of interest to you. To find this trial, click on the study title.
    • 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.

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