RACE to Fight NF

#JoinTheRace with NF North Central to stop NF by learning more about the following:

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NF North Central Knock Out to Rock Out 2019


Did You Know?

The number of babies born with NF in the United States Every Day is 4

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 CoordinatorBrianna CostelloJamie Burgess

Phone: (773) 975-8664

Click here to go to website

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 ChengNancy Gee

Phone: (617) 632-4595

Click here to go to web site

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.

Click here to go to web site

Children’s Hospital Los Angeles

4650 Sunset Blvd, MS#82
Los Angeles, CA 90027

Principal Investigator: Tena Rosser, MD
Study Coordinators: Kelley HaleyPatricia DiazRegina WoonJoshua Yang

Phone: (323) 361-7319; (323) 361-2480

Click here to go to website

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 PatelJa Lee

Phone: (202) 476-5299; (202)476-4481

Click here to go to website

Cincinnati Children’s Hospital Medical Center

3333 Burnet Avenue – ML 4006
Cincinnati, OH 45229-3039

Principal Investigator: Elizabeth Schorry, MD; Brian Weiss, MD
Study CoordinatorJulie McDonaldLori BackusSara Manning.

Phone: (513) 636-8773; (513) 636-2047

Click here to go to website

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

Click here to go to website

Johns Hopkins Hospital

1550 Orleans St.
Ste 1M-16
Baltimore, MD 21231

Principal Investigator: Jaishri Blakely,
Study Coordinator: Shannon LangmeadLindsay Blair

Phone:  410-502-6732; 410-955-8009

Click here to go to website

Massachusetts General Hospital

326 Cambridge Street 210A
Boston, MA 02114

Principal Investigator: Scott Plotkin, MD, PhD
Study CoordinatorLora Wang

Phone: (617) 643-1933

Click here to go to website

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 CoordinatorAndrea Gillespie, RN, MS

Phone: (301) 402-1848; (301) 496-8009

Click here to go to website

New York University Medical Center

Hassenfeld Clinic
New York, NY 10016

Principal Investigator: Jeffrey Allen, MD; Matthias Karijannis, MD
Study CoordinatorAnna Yaffe

Phone: (212) 263-9945

Click here to go to website 

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 DirectorKaren Cole-Plourde

Phone: (205) 934-5140

Click here to go to website

University of Chicago

Pediatric Neurology MC 3055
5841 S. Maryland Avenue
Chicago, IL 60637

Principal Investigator: James Tonsgard, MD
Study CoordinatorCynthia MacKenzie, RN

Phone: (773) 203-2344

Click here to go to website

University of Pennsylvania

Children’s Hospital of Philadelphia
3400 Civic Center Boulevard
Philadelphia, PA 19104

Principal Investigator: Michael Fisher, MD
Study CoordinatorRatnakar Patti, PhD

Phone: (267) 426-5503

Click here to go to website

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 CoordinatorCarrie Bailey

Phone: (801) 587-9017

Click here to go to website

Washington University

Department of Neurology
Box 8111
660 South Euclid Avenue
St.Louis, MO 63110

Principal Investigator: David H. Gutmann, MD, PhD
Study CoordinatorLisa Murray, MA, CCRP

Phone: (314) 454-4240; (314) 747-5384

Click here to go to website

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 KhizerLawrence Matarutse.

Phone: (404) 785-4688

Click here to go to website

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

Click here to go to website

Royal Children’s Hospital

Flemington Road Parkville
Melbourne Victoria 3052 Australia

Study Coordinator: Kathryn North AM 

Phone: +61 3 8341 6226

Click here to go to website

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

Click here to go to website

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.