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NF Clinical Trials Consortium
The NF Clinical Trials Consortium is dedicated to conducting clinical trials to improve the quality of life of persons with neurofibromatosis. Since the discovery of the genes responsible for the different forms of neurofibromatosis, much has been learned about how the various problems associated with neurofibromatosis come about. This opens the door towards the development and testing of medications that may be helpful in preventing or treating complications of the disorders. The NF Clinical Trials Consortium was formed in 2006 with funding from the U.S. Army Medical Research and Materiel Command to carry out clinical trials of such medications.
The NF Clinical Trials Consortium currently consists of thirteen patient recruitment sites, eight collaborating sites, and an Operations Center at the University of Alabama at Birmingham. They are:
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
For more information visit the NF Consortium website.
RESOURCES
- Webinars for those impacted by NF
- Understanding Neurofibromatosis (ebook)
- Understanding Neurofibromatosis Type 2 (ebook)
In Their Own Words