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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Barth syndrome


Other Names for this Disease

  • 3-methylglutaconic aciduria type II
  • BTHS
  • Cardioskeletal myopathy with neutropenia and abnormal mitochondria
  • MGA type II
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Barth syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • Orphanet lists clinical trials, research studies, and patient registries enrolling people with this condition. Click on Orphanet to view the list.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

Patient Registry

  • The Barth Syndrome Registry and DNA Bank (BRR) at the University of Florida¬† is collecting information directly from families and from patient records to build a large anonymized database that is useful for answering scientific research questions and that is a source of medical information.¬† Additionally, the registry is collecting blood samples for DNA isolation and storage and for the development of special cell lines.
  • 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.

General Clinical Trials & Research

  • 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.
Other Names for this Disease
  • 3-methylglutaconic aciduria type II
  • BTHS
  • Cardioskeletal myopathy with neutropenia and abnormal mitochondria
  • MGA type II
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.