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Subject:
looking for a doctor treating Cronkhite-Canada Syndrome
Category: Health Asked by: damocles-ga List Price: $25.00 |
Posted:
25 Mar 2005 14:03 PST
Expires: 24 Apr 2005 15:03 PDT Question ID: 500455 |
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. | |
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Subject:
Re: looking for a doctor treating Cronkhite-Canada Syndrome
Answered By: jackburton-ga on 28 Mar 2005 12:37 PST Rated: |
======================================== 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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damocles-ga
rated this answer:
and gave an additional tip of:
$7.50
Very helpful research. We're continuing to look though -- this is a very rare disease. |
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Subject:
Re: looking for a doctor treating Cronkhite-Canada Syndrome
From: kamikins-ga on 29 Aug 2005 22:25 PDT |
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. |
Subject:
Re: looking for a doctor treating Cronkhite-Canada Syndrome
From: damocles-ga on 30 Aug 2005 06:24 PDT |
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? |
Subject:
Re: looking for a doctor treating Cronkhite-Canada Syndrome
From: damocles-ga on 01 Sep 2005 19:48 PDT |
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. |
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