Back in 1993 when the ALGSA was founded journal articles on ALGS were not nearly as plentiful as they are today. The pickings were slim, but quickly accelerated following discovery of the JAG1 gene as a central cause of ALGS in 1997. This exciting event is captured in a press release issued by the National Institutes of Health in July 1997 [] and the finding was reported in the journal Nature Genetics [].

Journal articles and other publications about ALGS are now widely available in several online locations. A few good places to search are shown here.

The United States National Library of Medicine at the National Institutes of Health hosts an online search engine called [] A recent search on “alagille syndrome” returned over 800 articles on all aspects of ALGS.

The Childhood Liver Disease Research Network (ChiLDReN) is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations in the US and Canada and with a research lab in London. The ChiLDReN website provides a list of publications by the Network. [] A recent search on “alagille” returned 5 manuscripts and 4 abstracts related to ALGS. ChiLDReN also provides information about ALGS for families [] and medical professionals [] , each helpful in understanding the disease.

An excellent article on Medical Management of Alagille Syndrome is available on the Journal of Pediatric Gastroenterology and Nutrition website. [] Written by Binita M Kamath, Kathleen M Loomes and David A Piccoli, this article provides an overview of clinical evaluation and medical management of ALGS as well as an extensive list of publications with links to full text manuscripts.

Google Scholar is another rich source of medical publications on ALGS. [] A recent search on “alagille syndrome” returned over 1,000 articles on all aspects of ALGS.


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