Useful websites to search for further scientific information
Please Note: When accessing literature always check the published date, as research and knowledge is progressing at a rapid rate. What was the case in the early 2000s has more than likely been superceded in the past decade or more, as ongoing research has progressed our knowledge and understanding of the disease, its progression, the genetics and treatment. Always go for the most recent data you can locate and access.
The journals and websites listed below offer a starting point to delve into the world of research, and the list is by no means exhaustive. Most of the articles you find using a keyword search will be abstracts only, however, there are still quite a number of full text articles available in these websites.
The PSC Partners Seeking a Cure organisation has amassed a significant collection of articles and literature pertaining to PSC: They state: "We've collected the most unique, massive research literature list of more than 128,000 scientific articles on PSC-related topics on the web that patients, health care providers, and researchers can access." This collection of literature contains a wealth of information and is organised into different areas. For example, there are sections on scientific literature (accessed by keyword), FAQs covering all aspects of PSC, PSC resources, genetics, and pathways, among others. If you scroll down a little way you will find a personal story on how best to use all this information to narrow down and locate information pertaining to your own particular question, interest or concern.
A special edition on liver disease in children has been published in the journal Clinical Liver Disease. These are full text articles.
Highwire Stanford University: This online depository has a list of journals, many of which have free, full text articles available for download, although many are also only available on purchase. A keyword search of primary sclerosing cholangitis brought up 2,628 hits.
Gastroenterology: The official journal of the American Gastroenterology Society. Some of the articles are free full text articles.
Liver Transplantation: This is the official journal of the American Association for the Study of Liver Diseases (AASLD) and the International Liver Transplantation Society. Keyword searches can be performed to bring up relevant articles on PSC or other topics published in the journal. It is also available as an App.
Mayo Clinic: It is worth taking some time to explore this site as it has an enormous range of information in general, but also specifically on PSC, which you can access by clicking here. From this site you will find links to research that has been conducted by researchers at the Mayo Clinic concerning PSC, as well as research currently underway.
Medline Plus This is the US National Institutes of Health's website designed for consumers to provide up-to-date information about diseases, conditions and other issues, in easy to understand language. As with other sites, remember that not all information will be pertinent to the Australian context and you will need to check with your health care provider. You are able to conduct a keyword search for all topics in their library. A search for primary sclerosing cholangitis gave 34 hits on articles that were relevant.
Newsmedical: The purpose of this website is to distribute medical news to the widest possible audience and to facilitate interaction between all parts of the medical health sciences community worldwide. It has a keyword search that brings up some articles on PSC, and other topics of interest.
Orphanet Journal of Rare Diseases: While this journal covers all rare diseases, a keyword search of PSC will bring up all research on PSC and related topics published in this journal.
PLOS ONE: This is an international, peer-reviewed, open-access (free full text), online publication.
World Journal of Gastroenterology: This journal covers all research topics related to gastroenterology, including PSC which can be found here. A keyword search is available for searching other topics. Full text articles appear to be available from this journal.
A special edition on liver disease in children has been published in the journal Clinical Liver Disease. These are full text articles.
Highwire Stanford University: This online depository has a list of journals, many of which have free, full text articles available for download, although many are also only available on purchase. A keyword search of primary sclerosing cholangitis brought up 2,628 hits.
Gastroenterology: The official journal of the American Gastroenterology Society. Some of the articles are free full text articles.
Liver Transplantation: This is the official journal of the American Association for the Study of Liver Diseases (AASLD) and the International Liver Transplantation Society. Keyword searches can be performed to bring up relevant articles on PSC or other topics published in the journal. It is also available as an App.
Mayo Clinic: It is worth taking some time to explore this site as it has an enormous range of information in general, but also specifically on PSC, which you can access by clicking here. From this site you will find links to research that has been conducted by researchers at the Mayo Clinic concerning PSC, as well as research currently underway.
Medline Plus This is the US National Institutes of Health's website designed for consumers to provide up-to-date information about diseases, conditions and other issues, in easy to understand language. As with other sites, remember that not all information will be pertinent to the Australian context and you will need to check with your health care provider. You are able to conduct a keyword search for all topics in their library. A search for primary sclerosing cholangitis gave 34 hits on articles that were relevant.
Newsmedical: The purpose of this website is to distribute medical news to the widest possible audience and to facilitate interaction between all parts of the medical health sciences community worldwide. It has a keyword search that brings up some articles on PSC, and other topics of interest.
Orphanet Journal of Rare Diseases: While this journal covers all rare diseases, a keyword search of PSC will bring up all research on PSC and related topics published in this journal.
PLOS ONE: This is an international, peer-reviewed, open-access (free full text), online publication.
World Journal of Gastroenterology: This journal covers all research topics related to gastroenterology, including PSC which can be found here. A keyword search is available for searching other topics. Full text articles appear to be available from this journal.
International Clinical Trials & Research
International Clinical Trials Registry: The World Health Organisation's search portal for international clinical trials.
The PSC Patient Registry:
"We invite you to join the PSC Partners Patient Registry. The goal of the registry is to collect de-identified (anonymous) information on patients diagnosed with primary sclerosing cholangitis (PSC) in order to increase and accelerate research, enable clinical and drug trials, and find effective treatments for PSC. PSC is a poorly understood disease for which there are currently no effective therapies and no known cure. We hope that our patient registry will provide a forum for PSC patients from all over the world to share their medical information and provide researchers with data that will lead to a better understanding of PSC". Please ensure that you have proof of diagnosis in some format so that the data you provide can be used.
Norwegian PSC Research Center (NoPSC): "Norwegian PSC Research Center (NoPSC) was established 19th of May 2008 at the Medical Department, Rikshospitalet upon signing of a contract between the University of Oslo and Rikshospitalet on the handling of funds from Canica A/S. The funds are exclusively dedicated to research related to basic and clinical aspects of the chronic liver disease PSC".
Page Created: 14.03.2014
Page Updated: 04.09.2015