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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Systemic capillary leak syndrome


Other Names for this Disease
  • Capillary leak syndrome
  • Capillary leak syndrome with monoclonal gammopathy
  • Clarkson disease
  • Periodic systemic capillary leak syndrome
  • SCLS
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Treatment


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How might systemic capillary leak syndrome be treated?

Unfortunately, there is no cure for systemic capillary leak syndrome at this time.  However, recent studies suggest that taking medication known as beta-adrenergic agonists (including terbutaline) or undergoing immunoglobulin intravenous (IV) therapy may reduce the frequency of attacks and may increase survival in individuals affected with this condition.[1]
Last updated: 8/30/2012

References
  1. Gousseff M, Arnaud L, Lambert M, Hot A, Hamidou M, Duhaut P, Papo T, Soubrier M, Ruivard M, Malizia G, Tieulié N, Rivière S, Ninet J, Hatron PY, Amoura Z; Capillary Leak Syndrome Registry. The systemic capillary leak syndrome: a case series of 28 patients from a European registry. Annals of Internal Medicine. 2011; 154:464-471. http://www.ncbi.nlm.nih.gov/pubmed/21464348. Accessed 8/28/2012.


Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Systemic capillary leak syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • 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, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".