Ann & Robert H. Lurie Children's Hospital of Chicago
225 East Chicago
Box 30
Chicago, IL 60611
Principal Investigator: Robert Listernick, MD; Stewart Goldman, MD
Study Coordinator: Brianna Costello; Jamie Burgess
Phone: (773) 975-8664
Boston/Harvard Center for NF and Allied Disorders
Neurofibromatosis Program
300 Longwood Avenue
Boston, MA 02115
Principal Investigator: Nichole Ullrich, MD, PhD
Study Coordinator: Lora Wang; Clarissa Cheng; Nancy Gee
Phone: (617) 632-4595
Children's Hospital at Westmead, University of Sydney
Cnr Hawkesbury Road and Hainsworth Street, Westmead
Locked Bag 4001, Westmead, 2145
Sydney, NSW, Australia
Principal Investigator: David Little, MD
Study Coordinator: Belinda Barton, PhD
Phone: (02) 9845 3057
This site will only recruit for the BMP-2 (Bone) study.
Children's Hospital Los Angeles
4650 Sunset Blvd, MS#82
Los Angeles, CA 90027
Principal Investigator: Tena Rosser, MD
Study Coordinators: Kelley Haley; Patricia Diaz; Regina Woon; Joshua Yang
Phone: (323) 361-7319; (323) 361-2480
Children's National Medical Center
Department of Neurology
111 Michigan Avenue, NW
Washington, DC 20010
Principal Investigator: Roger Packer, MD
Study Coordinator: Kaitlin Hardy; Niha Patel; Ja Lee
Phone: (202) 476-5299; (202)476-4481
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue - ML 4006
Cincinnati, OH 45229-3039
Principal Investigator: Elizabeth Schorry, MD; Brian Weiss, MD
Study Coordinator: Julie McDonald; Lori Backus; Sara Manning.
Phone: (513) 636-8773; (513) 636-2047
Indiana University
1044 West Walnut Street
Cancer Center, Room 402A
Indianapolis, IN 46202
Principal Investigator: Wade Clapp, MD
Study Coordinator: Cindy Dwight
Phone: (317) 274-4928
Johns Hopkins Hospital
1550 Orleans St.
Ste 1M-16
Baltimore, MD 21231
Principal Investigator: Jaishri Blakely,
Study Coordinator: Shannon Langmead; Lindsay Blair
Phone: 410-502-6732; 410-955-8009
Massachusetts General Hospital
326 Cambridge Street 210A
Boston, MA 02114
Principal Investigator: Scott Plotkin, MD, PhD
Study Coordinator: Lora Wang
Phone: (617) 643-1933
Mayo Clinic
200 First Street SW
Rochester, MN 55905
Principal Investigator: Dusica Babovic-Vuksanovic, MD
Study Coordinator: TBD
Phone: (507) 284-3215
National Cancer Institute
Pediatric Oncology Branch
10 Center Drive
Building 10 CRC, room 1-5750
Bethesda, MD 20192-1101
Principal Investigator: Brigitte Widemann, MD
Study Coordinator: Andrea Gillespie, RN, MS
Phone: (301) 402-1848; (301) 496-8009
New York University Medical Center
Hassenfeld Clinic
New York, NY 10016
Principal Investigator: Jeffrey Allen, MD; Matthias Karijannis, MD
Study Coordinator: Anna Yaffe
Phone: (212) 263-9945
University of Alabama at Birmingham
Department of Genetics
Kaul Human Genetics Building
1530 3rd Ave S
Birmingham, AL 35294
Principal Investigator: Bruce R. Korf, MD, PhD
Program Director: Karen Cole-Plourde
Phone: (205) 934-5140
University of Chicago
Pediatric Neurology MC 3055
5841 S. Maryland Avenue
Chicago, IL 60637
Principal Investigator: James Tonsgard, MD
Study Coordinator: Cynthia MacKenzie, RN
Phone: (773) 203-2344
University of Pennsylvania
Children's Hospital of Philadelphia
3400 Civic Center Boulevard
Philadelphia, PA 19104
Principal Investigator: Michael Fisher, MD
Study Coordinator: Ratnakar Patti, PhD
Phone: (267) 426-5503
University of Utah
Division of Medical Genetics
Department of Pediatrics
2C412 SOM
50 N. Mario Capecchi Dr.
Salt Lake City, Utah 84132
Principal Investigator: David Viskochil, MD, PhD
Study Coordinator: Carrie Bailey
Phone: (801) 587-9017
Washington University
Department of Neurology
Box 8111
660 South Euclid Avenue
St.Louis, MO 63110
Principal Investigator: David H. Gutmann, MD, PhD
Study Coordinator: Lisa Murray, MA, CCRP;
Phone: (314) 454-4240; (314) 747-5384
Children's Healthcare of Atlanta
Department of Pediatric Neurology
605 Chantilly Drive NE, Suite 300
Atlanta, GA 30324
*Currently NF2 study only
Principal Investigator: David S. Wolf, MD, PhD
Study Coordinator: Saadia Khizer; Lawrence Matarutse.
Phone: (404) 785-4688
Texas Scottish Rite Hospital
Texas Scottish Rite Hospital for Children
2222 Welborn St
Dallas, TX 75219
*Currently BMP2 study only
Principal Investigator: Steve Richards, MD
Study Coordinator: Jennifer Rodgers, MA, LPC
Phone: (214) 559-8562; Pager: (972) 205-8399
Royal Children’s Hospital
Flemington Road Parkville
Melbourne Victoria 3052 Australia
Study Coordinator: Kathryn North AM
Phone: +61 3 8341 6226
University of Minnesota
Pediatric Hematology/Oncology
D-557 Mayo Memorial Building
420 Delaware Street SE, MMC 484
Minneapolis, MN 55419
Principal Investigator: Christopher Moertel, MD
Study Coordinator: Ruth Elling
Phone: 612-365-8100; 612-626-5267
University of Texas Southwestern
Neurofibromatosis Clinic
Children's Health Dallas
1935 Medical District Drive
Dallas, Texas 75235
Principal Investigator: Laura Klesse MD, PhD
Research Coordinator: Brittany Glass-Thomas
Phone: 214-456-2382