This rare disease has symptoms including loss of taste, intestinal
polyps, hair loss, and poor nail growth.  It is often fatal because of
malabsorption.  The disease occurs primarily in older people (mean age
59) and it is not believed to have a genetic component.  There have
been fewer than 400 cases reported in the past 50 years, primarily in
Japan, but also in the U.S. and other countries.  Ideally, I am
looking for the name of a physician (probably a gastroenterologist)
who is treating a newly diagnosed case.  The purpose is to ask a
question that might affirm or deny a theory about the biological cause
of the disease.

---

Request for Question Clarification by jackburton-ga on 26 Mar 2005 05:01 PST

Clyde Horton is being treated for Cronkhite-Canada Syndrome by Dr Herb
Wolfsen, a gastroenterologist at the Mayo Clinic, Jacksonville,
Florida...
  
http://netpluscom.com/~rhudson/c47/class47a.htm#14
  
Would you like Dr Wolfsen's contact details? 
  
Jackburton

---

Clarification of Question by damocles-ga on 26 Mar 2005 05:46 PST

Yes thank you.  If you would be good enough to provide the contact
details your answer will be satisfactory even if the case is no longer
active.  Until we find an active case, I plan to  keep the question
open (at the same rate) or re-ask the question if that's the easier
way to do it.

---

Request for Question Clarification by jackburton-ga on 26 Mar 2005 11:51 PST

Contact details for  Dr. Wolfsen...
       
Dr. Herbert Wolfsen
(Gastroenterologist and Hepatologist)
4500 San Pablo Rd.
Jacksonville, FL 32224
    
Tel: (904) 953-2221
E-mail:pdt@mayo.edu
  
Dr. Herbert Wolfsen - http://www.mayoclinic.org/gi-jax/10860380.html
   
   
Let me know if this answers your question.
   
Jackburton

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Clarification of Question by damocles-ga on 26 Mar 2005 19:27 PST

Thank you -- this satistfies the question.  As I mentioned previously,
we are looking for a doctor treating an active case and if you find
another one please look for the new posting.

========================================
You may also wish to contact the Dana-Farber Cancer Institute - they
have on-going colorectal cancer study...
  
Dana-Farber hereditary colorectal cancer study
http://www.dana-farber.org/pat/cancer/gastrointestinal/gi-colorectal.asp
  
The Dana-Farber hereditary colorectal cancer registry consists of a
large collection of families with hereditary colorectal cancer
predisposition syndromes. These include hereditary nonolyposis colon
cancer (HNPCC), familial adenomatous polyposis (FAP), Peutz-Jeghers
syndrome, Juvenile polyposis syndrome, and other related rare
syndromes.
  
To date, more than 250 families have been enrolled in the study and
many more are still being enrolled as part of an ongoing study. (...)
  
Purpose of the study
The purpose of the Dana-Farber hereditary colorectal cancer registry
is to investigate the genetic basis of hereditary colon cancer
predisposition syndromes, correlate them with the clinical
presentations, with the ultimate goal of prevention of cancer in such
families.
  
Study contact:
  
Prathap Bandipalliam
Phone: (617) 632-6877
Prathap_Bandipalliam@dfci.harvard.edu
  
Dana-Farber Cancer Institute
44 Binney Street
Boston, MA 02115
  
========================================
  
  
Other people you may want to approach:
  
  
Masakazu Yashiro, MD
  
Case Report:
'Cronkhite-Canada Syndrome Containing Colon Cancer and Serrated Adenoma Lesions'
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ProduktNr=223838&Ausgabe=229930&ArtikelNr=76560
  
Author contact:
  
Masakazu Yashiro, MD
Department of Surgical Oncology, Osaka City University Graduate School of Medicine
1-4-3 Asahi-machi, Abeno-ku
Osaka 545-8585 (Japan)
  
Fax +81 6 6646 6450, 
E-Mail m9312510@med.osaka-cu.ac.jp
  
========================================
  
  
Sapna Syngal, M.D., M.P.H.
  
"Dr. Syngal?s research and clinical interests are primarily related to
the genetics, screening and primary prevention of gastrointestinal
tumors, primarily colorectal cancer. The major focus is on hereditary
colorectal cancer syndromes, notable hereditary nonpolyposis
colorectal cancer (HNPCC) and familial adenomatous polyposis (FAP)."
http://www.brighamandwomens.org/gastroenterology/research/Syngal.asp
   
Dr Sapna Syngal
Email:SSyngal@partners.org 
  
Brigham and Women's Hospital 
75 Francis Street, Boston, MA 02115, USA
  
Phone: 	1 (617) 732-5500 
1 (617) 732-6458 TTY/TTD
  
  
========================================
	  
Search terms used:
  
"Cronkhite-Canada Syndrome"
mayoclinic.org wolfsen
"Cronkhite-Canada Syndrome" research
"hereditary colorectal cancer syndromes" research
  
	  
  
I hope this helps.
  
Jackburton
Google Answers Researcher

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Request for Answer Clarification by damocles-ga on 29 Mar 2005 18:46 PST

Thank you.  

CCS is not a hereditary disase nor usually cancerous.  I appreciate
the though though and may contact them (Dana-Farber if no case turns
up).  The same applies to Dr Syngal.  If I do end up following that
route and the search is successful, I will let you know.

I emailed Dr. Yashiro last January and received a reply saying that he
no longer was in contact with the case.

I'm not sure whether you received payment for  your first answer (Dr
Wolfsen -- his case, by the way, is in remission)).  Do I have to do
something else to initiate it?

---

Clarification of Answer by jackburton-ga on 30 Mar 2005 04:36 PST

The question is now officially answered, and payment ($18.75) has been
transferred to my account. The additional information I included is
free of charge. You don't need to do anything more.
  
See Google Answers FAQ:
http://answers.google.com/answers/faq.html#whenanswered
  
I hope your search is successful.

---

Request for Answer Clarification by damocles-ga on 30 Mar 2005 07:59 PST

Why $18.75?  Shouldn't it have been $25?  That was the price I listed.

---

Clarification of Answer by jackburton-ga on 30 Mar 2005 08:12 PST

Three-quarters of your question price goes directly to the Researcher
who answers your question; the other 25 percent goes to Google to
support the service.

Very helpful research.  We're continuing to look though -- this is a
very rare disease.

My partner (44 yr old female) was recently diagnosed with
Cronkhite-Canada Syndrome with malignant malabsorption.  She is
currently under the care of Dr. J. Kent Hamilton at Baylor Hospital in
Dallas, TX, as well as she recently went to the Mayo Clinic in
Rochester, MN, and is now also under the care of Dr. (Lisa?) Boardman.

Thank you for your reply.  I would like to contact your partner but
need to do so through the doctor who is treating her.  Can you tell me
whether your partner's next appointment is with Dr. Hamilton or Dr.
Boardman and approximately when it will take place?  Will she also be
followed by someone in your area?

I haven't heard back from you and so am making this second contact to
clarify my purpose.  I am part of a group of molecular biologists, at
a major university, who are searching for the cause of
Cronkhite-Canada Syndrome.  The extreme rarity of the disease has made
it very difficult to find a case on which to test that theory -- which
is why I took the step of posting the question on Google Answers.  To
test the theory, we want to ask some your partner a few questions --
all very nonintrusive.  Also -- as you may know, a common symptom of
the disease is abnormal fingernail growth.  We should be able to prove
or disprove our theory doing detailed analysis of two nail clippings
from a patient with Cronkhite-Canada Syndrome -- one clipping from an
abnormal growth area and one from a normal growth area.

Research regulations require us to ask our questions and make other
contact through one of the treating physicians.  Today I faxed Dr.
Hamilton (he has no email) to see if he will take that role.  If your
partner is interested in being the case in the study (i.e. if she will
donate the two nail clippings) please ask her to contact Dr.
Hamilton's office and let  him know.   If I don't hear from you either
on this site or through Dr. Hamilton, I will assume that your partner
is not interested in participating and continue looking for a case. 
Either way, I wish her, and you also, all the best.