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The standards for clinical
care of Fanconi anemia patients were developed at a consensus conference
sponsored by the Fanconi Anemia Research Fund in March 2003. The
Fund owes a tremendous debt of gratitude to Eva Guinan, MD, Dana-Farber
Cancer Institute, for serving as moderator of the conference and
to all the participants for donating their time and expertise to
develop these standards. Special thanks to David Nathan, MD, Dana-Farber
Cancer Institute, for writing the Foreword and to Joyce Owen,
PhD, Eugene, OR, for editing the book.
The handbook contains
the following chapters:
- Diagnostic Evaluation
- Treatment of Hematologic
Abnormalities
- Gastrointestinal,
Hepatic, and Nutritional Problems
- Hand and Arm Differences
- Gynecologic and
Fertility Issues
- Endocrine Disorders
- Matched Sibling
Donor Hematopoietic Cell Transplantation
- Unrelated Donor
Hematopoietic Cell Transplantation
- Novel Treatment
Options
- Squamous Cell Carcinoma
- Psychosocial Issues
- A Mother's Perspective:
The Grieving Process and the Physican's Role
The participants in the
consensus conference from which the standards were derived include
the following:
- Blanche Alter,
MD, MPH, National Cancer Institute
- Grover Bagby, Jr.
MD, Director, Oregon Health and Science University Cancer
Institute
- Bruce Blazar, MD,
University of Minnesota Stem Cell Institute
- Wolfram Ebell,
MD, Charitè Hospital, Humboldt University, Berlin
- Andrew Eichenfield,
MD, Medical Director, Camp Sunshine, Sebago Lake, Maine
- Alfred Gillio,
MD, Hackensack University Medical Center
- Eva C. Guinan,
MD, Dana-Farber Cancer Institute
- Richard Harris,
MD, Cincinnati Children's Hospital Medical Center
- Patrick Kelly,
MD, Cincinnati Children's Hospital Medical Center
- Thomas Kiefhaber,
MD, Hand Surgeon, Cincinnati
- Scott Kozin, MD,
Shriners Hospital for Children, Philadelphia
- Peter Kurre, MD,
Fred Hutchinson Cancer Center, Seattle
- David Kutler, MD,
Memorial Sloan-Kettering Cancer Center
- Jeffrey Lipton,
MD, PhD, Schneider Children's Hospital, New Hyde Park, NY
- Heidemarie Neitzel,
PhD, Institute for Human Genetics, Charitè Hospital,
Berlin
- F. Jean Perrault,
MD, Montreal Children's Hospital
- Anna Petryk, MD,
University of Minnesota Medical School
- Zora R. Rogers,
MD, University of Texas Southwestern Medical Center
- Susan Rose, MD,
Cincinnati Children's Hospital Medical Center
- Sarah Jane Schwarzenberg,
MD, University of Minnesota Medical School
- James Sciubba,
DMD, PhD, The Johns Hopkins Hosptital
- Akiko Shimamura,
MD, PhD, Dana-Farber Cancer Institute
- Bhuvanesh Singh,
MD, Memorial Sloan-Kettering Cancer Center
- Pamela Stratton,
MD, National Institute of Child Health and Human Development,
NIH
- John E. Wagner,
MD, Univeristy of Minnesota Medical School
- Michael P. Wajnrajch,
MD, Weill Medical College
- Christopher Walsh,
MD, PhD, Mount Sinai School of Medicine
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