I am trying to identify any doctors, clinics, hospitals, or medical
schools that have above-average experience/knowledge/interest in a
grisly autoimmune disease affecting the skin called pyoderma
gangrenosum.  A family member has exhausted all his options locally,
and would like to give his physician some leads to others to talk to
about his case, or to make a referral to someone in another geographic
area.

I have searched on Google for several hours over the past week, and
located lots of information about the disease and common treatment
strategies; when present, the bylines or source organizations are
helpful leads, but I know there must be other channels I could use if
I only knew about them.

Here's my question: How do medical professionals locate this kind of
information?  Are there registries of researchers in different fields?
 Proprietary databases not available to nonprofessionals but that I
could ask a local contact to use?

I realize this isn't a question that has a "correct" answer as such,
but I hope someone with medical experience (or at the very least some
"connections")can provide some helpful suggestions.

Thank you very much.

---

Request for Question Clarification by luciaphile-ga on 24 Aug 2002 13:27 PDT

Where in the U.S. are you located?  If you could give me the name of
your state that would be helpful.

Regards,
Luciaphile-ga

Hi Yreka,

As someone who has worked for docs for more years than I care to
admit, I'll tell you how referrals are usually handled; it's done
rather informally  -- one doc knows a guy who knows a guy who's had
experience with certain cases.  They seem to have their own
proprietary networks.

If it was something very exotic, the first referral would to the
closest medical college/health sciences center associated with a
teaching hospital.  Those departments received the most difficult,
diverse, and volume of cases in that particular section of the
country.

Most physicians also have at their disposal a copy of the Marquis
Who's Who Directory of Medical Specialists 
http://www.abms.org/searchsite.htm, which back 'in the day' was just
known as the 'Red Book.'

Another way your doctor could go would be to contact the American
Academy of Dermatology http://www.aad.org directly for an appropriate
referral.

For the specific condition you're asking about, and the person is
willing to travel out of state, both the New York University School of
Medicine http://www.med.nyu.edu/Derm and UCLA Medical Center
http://www.healthcare.ucla.edu/prs/contact.htm  have outstanding derm
departments.  Usually patients are referred to someone on either coast
once they've exhausted their local resources.

If you are in need of a patient advocate, there is also a subscription
service called Best Doctors http://www.bestdoctors.com who put
patients in touch with specialists.

Here are some other sites you that might interest you as well:

NLM Gateway
http://gateway.nlm.nih.gov/gw/Cmd
Marshall Online
http://www.marshall.usc.edu/web/Library.cfm?doc_id=2020
Thomson Products
http://www.medec.com/html/products/productdetail/emed_physician.html
Praxis M.D.
http://praxis.md/bhg/bhghome.asp
Choosing a Doctor
http://www.ccfa.org/medcentral/library/coping/doctor2.htm
Veritas Medicine
http://www.veritasmedicine.com 

I hope this information is helpful to you, yreka, and please come back
and see us at Google Answers.

Regards,
V

Oops, sorry on that praxis link it should be: http://praxis.md/praxisgate.asp
Please let us know if we can help you further.

Voila's comments are all on target also, although I didn't bother with
a discussion of referrals and such since the doctor in question would
already know other doctors, have who's who, and know about teaching
hospitals. Those are perfect when you don't know what's wrong but
finding a specialist who has a particular expertise in a rare
condition, which is the case here, is somewhat different from just
locating a good dermatologist; that's why I concentrated on locating
the cutting edge researchers.

The suggestion to locate a patient advocate is very important.

Please bear in mind that Google Answers is just a general research
operation and none of the comments are to be taken as actual medical
advice.  We are merely expert researchers, some with extra knowledge
in particular areas, but researchers nonetheless, not doctors.

Just one final note, researching pyoderma gangrenosum, the name that
kept popping up as an expert in this area is Marketa Limova, M.D. at
UCSF.  She has presented cases at various dermatologic conferences and
has ongoing clinical trials through the Wound Clinic at UCSF.  Here is
the web address if your doctor would like to contact her:
http://dermatology.ucsf.edu/html/limova.htm
http://dermatology.ucsf.edu/html/ulcer.htm