Road to a Cure Pedal for PSC

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Search Literature

PSC Partners Seeking a Cure

Search Literature

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. Click here.

Scientific Literature by Keyword

If you’re searching for a specific article in the list above, this site is organized by key words, click here.

FAQ

This list of websites covers all aspects of PSC. Sources include medical publications, treatment sites, and patient groups, all alphabetically organized so it’s easy to find what you need. Click here.

Resources

If you’re searching for a specific article in the list above, this site is organized by key words, click here.

Genes

This page focuses on the important role genes play in PSC and autoimmune diseases. The listing connects you to research included in the Online Mendelian Inheritance in Man site. This is an advanced research site; get to it by clicking here.

Pathways

Specifically for researchers, this group of diagrams illustrates the pathways of cholesterol metabolism to bile acids, because this pathway is of direct relevance to PSC. Go to the link by clicking here.

Miscellaneous

A short list of relevant PSC sites includes past PSC Partners conference presentations, useful scientific references, and additional information is here.

PubMed Search

This link to the enormous National Institutes of Health PubMed site is a gateway to researching your disease. Click here.

PubChem Search

This government site for biochemical research is a gateway to learn more about chemical compounds, substances, bioassays, and structures. Click here to link.

Scirus Search

Scirus is the most comprehensive scientific research tool on the web, with over 450 million scientific items indexed. The search engine is primarily useful for researchers. It’s here.

Site Statistics

This site tracks the growth of the PSC literature site since 2004 and indicates the activity of people researching articles on the disease. Click here for the site.


Personal Story

How to find what you’re looking for on the PSC literature site

Scenario: I was just diagnosed with a mouthful: primary sclerosing cholangitis (PSC)! Since the only thing the ERCP (endoscopic retrograde cholangiopancreatography, another mouthful!) endoscopist said was, “You’re going to need a liver transplant.” (What?!) I naturally went to the Internet and searched for the term.

Up to this point, the scenario is exactly what happened to me in 2000. I get LOTS of hits, including The National Institute of Diabetes and Digestive and Kidney Diseases, Mayo Clinic, American Liver Foundation, Medscape, Merck, etc., and one site called psc-literature.org. After looking at all the other overviews, THAT sounds like it might be a resource to investigate more details; according to the site statistics, over 125,000 abstracts on PSC! The literature site is updated weekly by David and Judy Rhodes and is a part of the PSC Partners web site.

The http://www.psc-literature.org home page: As in the other sites, I again see a brief description of PSC. I also see a link that says FAQ (Frequently Asked Questions). Clicking on the FAQ link, I find most of the questions I want to ask, the responses, links to support groups, more brochures – a gold mine! I open the “Diagnosing PSC” link, hoping to find more information on ERCP, as I had a fairly common reaction called pancreatitis (and I REALLY do not want to go through that again!). Unfortunately, this didn’t really say much other than it’s a possible side effect. I go back to the psc-literature home page, and click on “Scientific Literature.”

I scroll down to “pancreatitis” and click on it. Over 1900 articles! I’m surely not going to read all these, so I do a find (ctrl-f or find in the browser) for “ERCP” as a starting point. One of the ones I get is:

Risk factors for post ERCP pancreatitis: prospective multi-center study. Am. J. Gastroenterol. 101: 139-147 (2006),

This sounds pretty interesting, but there are literally hundreds of hits for “ERCP”. Maybe I should restrict the search to “post-ERCP pancreatitis”? Now I get a more manageable list, which includes the above and:

Pharmacotherapy for the prevention of post ERCP pancreatitis. Am. J. Gastroenterol. 102: 52-55 (2007). Post-ERCP pancreatitis and its prevention. Nat. Clin. Pract. Gastroenterol. Hepatol. 3: 680-688 (2006).

Looking through these articles for 10-15 minutes, I learn that:

  • post-ERCP pancreatitis occurs in 5-7 percent of patients
  • pharmacological attempts to prevent it have not been successful, BUT
  • rectal prophylactic NSAIDs look promising as a prevention
  • stenting of the pancreatic duct looks promising as a prevention
  • risk factors include previous post-ERCP pancreatitis, SOD, experience of the endoscopist, age of the patient (older is better)

Of course, I had to look up some of the items (like SOD: Sphincter of Oddi Dysfunction, NSAID non-steroidal anti-inflammatory drugs, etc.). Wikipedia is a pretty good resource for overviews (use the references if you want more details), or any medical reference.

So now I know some questions to ask the next time I need an ERCP. Obviously, Internet research does not substitute for years and years of medical training, but I’m surely more informed now than I was!

Arne M.