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The WDA Centers of Excellence provide physicians who are well trained in the
diagnosis and treatment of Wilson's Disease, physician training and research
regarding Wilson's Disease, broad services needed by Wilson's Disease
patients and their families, and technical support required by patients
(including laboratory metal analysis).
To link to a listing of individuals who can offer support
to Wilson's Disease patients and families, CLICK
HERE. To link to a listing of physicians
and institutions familiar with Wilson's Disease and/or that accept
Wilson's Disease patients, CLICK
HERE.
University of
Michigan Hospital
George
Brewer, M.D.
Department of Human Genetics
University of Michigan
5022 Kresge Bldg. II
Ann Arbor, MI 48109-0534
USA
Phone: (734) 764-5499
Fax: (734) 763-3784
E-mail: brewergj@umich.edu
Web
site: http://www.med.umich.edu/gi/wilsonsdisease
Fred Askari, M.D., Ph.D.
Liver Clinic
Pod D, 3rd Floor Taubman
Ann Arbor, MI 48109-0352
Phone: (734) 936-0499
Fax: (734) 763-4574
Appointments: Contact Patti at 800-395-6431
E-mail: faskari@umich.edu
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The
Mount Sinai Medical Center-New York
Benjamin
Shneider, M.D.
The Mount Sinai Medical Center
Director, Pediatric Hepatology
P.O. Box 1633
One Gustave Levy Place
New York, NY 10029-6574
Phone: (212) 241-6227
Miodra
Velickovic, M.D.
Movement Disorders Center
Box 1637
Department of Neurology
The Mount Sinai Medical Center
5 East
Street, 1st Floor
New York, NY 10029-6574
Phone: (212) 241-5607
E-mail: miodrag.velickovic@mssm.edu
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Weill
Cornell Medical Center, New York
Michael
Schilsky, M.D.
Associate
Professor of Clinical Medicine
Medical Director, Center for Liver Disease and Transplantation
Weill Cornell Medical Center
525 East 68th Street, Box 98
New York, NY 10021
Phone: (212) 746-4129
Fax: (212) 746-8974
E-mail: mls2003@med.cornell.edu
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Mayo
Clinic - Rochester, Minnesota
Sihoun Hahn, M.D, PhD.
Mayo Clinic Co-director,
Biochemical Genetics Lab Associate Professor,
Department of Lab Medicine & Pathology,
Medical Genetics and Pediatric & Adolescent Medicine
Tel: 507-284-4523
Fax: 507-266-2888
E-mail: hahn.sihoun@mayo.edu
Kate Hibbs
Program Coordinator and Genetic Counselor
Phone: 507-538-4891
E-mail: biochemicalgenetics@mayo.edu
Wilson's Disease Clinic Appointments:
Mary Kelly
Phone: 507-284-8198
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K.E.M.
Hospital
Dr. Ashish Bavdekar
Associate Consultant
Pediatric Gastroenterologist
Liver and Gastroenterology Unit
Department of Pediatrics
T.D.H. Building, Ground Floor
K.E.M. Hospital, Rasta Peth
Pune 411011
India
Phone: 91-20-4037342/5538728
Mobile: 98220 56174
Fax: 91-020-6125603
E-mail: kemhrc@vsnl.com
or bavdekar@vsnl.com
Clinics for Wilson's Disease:
Mondays and Thursdays 11:00 a.m. - 1:00 p.m.
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WISDOM
Dr. D. P. Pande, Ph.D.
Wilson Disease Observation and Management
Dhawalgiri 17A
Anushakti Nagar PO
Mumbai –400094
India
Voice mail/Phone: 91-22- 2559 5515 (3:00 p.m. to 4:00
p.m.) or 2557 2947 (8:00 p.m. to 9:00 p.m.)
E-mail patient support: indiawisdom@yahoo.com
E-mail research collaborations: indiawisdom@hotmail.com
Clinics for
Wilson’s Disease Patients:
Monday, Wednesday and Friday: (3:00 p.m. to 5:00 p.m.)
For appointments, phone: 91-22- 24222160
Secretary, WISDOM, Dr. Aabha Nagral,
Consultant Gastroenterologist & Hepatologist
O-18, Bhavna Building 2nd floor
Veer Savarkar Road
Prabhadevi Clinic
Mumbai-400025
India
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Stanford
University Medical Center
Adult
Hepatology
Emmet B. Keeffe, M.D.
Phone: (650) 498-5691 (for appointments)
Fax: (650) 498-5692
Hepatology colleagues practicing in Stanford Liver Clinic: Peter
Gregory, M.D.; Gabriel Garcia, M.D.; Joanne C. Imperial, M.D.;
Aijaz Ahmed, M.D.; Andy Yu, M.D.
Pediatric Hepatology
William L. Berquist, M.D.
Phone: (650) 723-5070 (for appointments)
Fax: (650) 498-5608
Pediatric hepatology colleagues practicing in Lucile Packard
Children's Hospital Liver Clinic: Kenneth C. Cox, M.D.; Richardo
O. Castillo, M.D.
Adult Neurology
Helen M. Bronte-Stewart, M.D.
Phone: (650) 723-2116
Appointments: (650) 736-0514 (Heather Shaw, R.N.)
Pediatric Neurology
Terrance D. Sanger, M.D., Ph.D.
Phone: (650) 736-2154
Fax: (650) 725-7459
Appointments: (650) 724-4192 or
(650) 724-5360
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University
of Minnesota
Dr.
Harvey Sharp
Professor and Chief
Division of Pediatric Gastroenterology
13-130 Phillips-Wangensteen Building
516 Delaware Street
Minneapolis, MN 55455
Phone: (612) 624-2422
Fax: (612) 626-0639
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University
of California at Los Angeles
Dr. Jeff Bronstein
UCLA Neurology Department
710 Westwood Plaza Suite C128
Los Angeles, CA 90095-1769
Phone: (310) 794-2158
Fax: (310) 206-9819
E-mail: jbronste@ucla.edu
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Newly-Diagnosed
Patient Clinical Trial--
Liver Disease
The
University of Michigan, which has been designated a Wilson's
Disease Center of Excellence by the Wilson's Disease
Association, is conducting a randomized double blind study to
compare efficacy and toxicity of three anticopper drugs--penicillamine,
trientine, and tetrathiomolybdate--for the
initial treatment of Wilson’s disease patients presenting with
liver disease. The
objectives are to compare rate and degree of recovery of liver
function and to compare side effects.
To
be eligible, patients (adults and children) must be untreated or
not treated for longer than four weeks with an anticopper drug. Patients must have at least one of the following laboratory
abnormalities: serum albumin, 2.5 g/dl or less; serum bilirubin,
2.0 mg/dl or more; prolongation of prothrombin time, 4 seconds
or more; or an INR of 1.3 or more.
Patients with moderate degrees of hepatic decompensation
will be accepted, although not those likely to be in need of
immediate hepatic transplantation.
Patients with concomitant neurological or psychiatric
symptoms from Wilson’s disease are excluded from this
protocol.
The
treatment period is 24 weeks, the first 6 weeks of which are
spent in the General Clinical Research Center of the University
of Michigan Hospital, with free medical care and hospitalization
provided to the extent required for Wilson’s disease.
The next 18 weeks involves home treatment, with the
appropriate anticopper medication provided. It will be necessary to have blood tests every 2 weeks
during the 18-week period at home with the results sent to us.
The blood tests involve blood counts and liver function
tests, readily available anywhere.
The referring physicians will follow up with patients,
as desired. Patients
will be responsible for travel costs to Ann Arbor and for blood
tests during the last 18 weeks.
Referrals
should be directed to:
George
J. Brewer, M.D.
Emeritus Professor of Human
Genetics and Internal Medicine
Department of Human Genetics
University of Michigan
5022 Kresge Bldg. II
Ann Arbor, MI 48109-0534
USA
Phone: (734) 764-5499
Fax: (734) 615-2048
E-mail: brewergj@umich.edu
Fred
Askari, M.D., Ph.D.
Clinical Assistant Professor, Hepatology
University of Michigan
6520 MSRB I
Ann Arbor, MI 48109-0680
Phone: (734) 647-2964
Fax:: (734) 763-2535
E-mail: faskari@umich.edu
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Newly-Diagnosed
Patient Clinical Trial--
Neurologic Disorders
The
University of Michigan is conducting a randomized double blind
trial of two dose regimens of tetrathiomolybdate for the initial
treatment of Wilson’s disease patients presenting with the
neurological symptoms of Wilson’s disease.
The objectives are to improve initial therapy, avoid the
neurological worsening that often occurs with penicillamine
therapy, and minimize side effects.
To
be eligible, patients must be untreated or not treated for
longer than four weeks with an anticopper agent.
If workup is incomplete or diagnosis uncertain, we will
finish diagnostic workup in those cases where Wilson’s disease
is likely. Patients
of all ages and ethnic groups, and both sexes, are most welcome
in this study.
The
initial treatment period is 16 weeks, the first 6 weeks of which
are spent in the General Clinical Research Center of the
University of Michigan Hospital, with free medical care and
hospitalization provided, to the extent required for Wilson’s
disease. The next
10 weeks involves home treatment, with the tetrathiomolybdate
medication provided. It
will be necessary to have blood tests every two weeks during
this 10-week period with the results sent to us.
The blood tests involve blood counts and liver function
tests, readily available everywhere. We will help arrange subsequent care and will wish to
follow-up and help monitor the patients on a regular basis over
the following 2-3 year period.
After initial treatment, patients will be referred back
to the referring physician, if desired.
Referrals
should be directed to:
George
J. Brewer, M.D.
Emeritus Professor of Human
Genetics and Internal Medicine
University of Michigan Medical School
5024 Kresge Bldg. II
Ann Arbor, MI 48109-0534
Phone: (734) 764-5499
Fax: (734) 615-2048
E-mail: brewergj@umich.edu
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