Overview | Consortium History | Management and Oversight | Research Site Details | Approved Trial Details | NFRP Clinical Trials

The Neurofibromatosis Clinical Trials Consortium (NFCTC, http://www.uab.edu/nfconsortium) was established by the Department of Defense Neurofibromatosis Research Program (NFRP) to develop and perform clinical trials for the treatment of neurofibromatosis (NF) complications in children and adults. The Consortium is composed of fifteen clinical sites, ten collaborating affiliate sites, and an Operations Center at the University of Alabama at Birmingham under the direction of Dr. Bruce Korf. The purpose of the Operations Center is to provide administrative, data management, and statistical support to the NFCTC. Each of the clinical and collaborating sites has expertise in the treatment and management of NF and an established patient population available for clinical trials.

Operations Center
University of Alabama at Birmingham
Principal Investigator: Bruce R. Korf, MD, PhD
Phone: 205-996-2916
https://www.uab.edu/medicine/genetics/
https://www.uab.edu/medicine/nfprogram/clinic

Sites
Boston/Harvard Center for NF and Allied Disorders
Principal Investigator: Nichole Ullrich, MD, PhD
Phone: 617-632-4595
https://www.childrenshospital.org/services/multidisciplinary-neurofibromatosis-program

Children's Hospital at Westmead, University of Sydney
Principal Investigator: Belinda Barton, PhD
Phone: 02-9845-3057
https://www.schn.health.nsw.gov.au/neurogenetics-childrens-hospital-westmead

Children's Hospital of Los Angeles
Principal Investigator: Tena Rosser, MD
Phone: 323-361-7319; 323-361-5825
https://www.chla.org/neurological-institute/programs-and-services/comprehensive-neurofibromatosis-clinic

Children’s Hospital of Philadelphia/ University of Pennsylvania
Principal Investigator: Michael Fisher, MD
Phone: 267-426-5503
https://www.chop.edu/
https://www.chop.edu/service/neurofibromatosis/home.html

Children's National Medical Center
Principal Investigator: Roger Packer, MD
Phone: 202-476-5299; 202-476-4481
http://www.childrensnational.org/
https://www.childrensnational.org/get-care/departments/neurofibromatosis-institute

Cincinnati Children's Hospital Medical Center
Principal Investigator: Peter de Blank, MD, MSCE
Phone: 513-517-2068; 513-636-2047
http://www.cincinnatichildrens.org/
https://www.cincinnatichildrens.org/bio/d/peter-de-blank

Indiana University
Principal Investigator: Wade Clapp, MD
Phone: 317-274-4928
http://www.indiana.edu/

Mayo Clinic
Principal Investigator: Dusica Babovic-Vuksanovic, MD
Phone: 507-284-3215
http://www.mayo.edu/

National Cancer Institute
Principal Investigator: Brigitte Widemann, MD
Phone: 301-402-1848; 301-496-8009
http://www.cancer.gov/

New York University Medical Center
Principal Investigator: Jeffrey Allen, MD
Phone: 212-263-9945
http://www.med.nyu.edu/
https://nyulangone.org/care-services/comprehensive-neurofibromatosis-center

University of Alabama at Birmingham
Principal Investigator: Bruce R. Korf, MD, PhD
Phone: 205-934-5140 (Program Director, Karen Cole-Plourde)
https://www.uab.edu/medicine/genetics/
https://www.uab.edu/medicine/nfprogram/clinic

University of Chicago
Principal Investigator: James Tonsgard, MD
Phone: 773-203-2344
https://www.uchicagomedicine.org/comer/conditions-services/pediatric-neurology-neurosurgery/conditions-services/neurofibromatosis

University of Texas Southwestern
Principal Investigator: Laura Klesse MD, PhD
Phone: 214-456-2382
https://www.utsouthwestern.edu/

University of Utah
Principal Investigator: David Viskochil, MD, PhD
Phone: 801-587-9017
http://research.utah.edu/

Washington University
Principal Investigator: Amy Armstrong, MD
Phone: 314-454-6018
http://pediatrics.wustl.edu/faculty/Armstrong_A

Affiliate Sites
Ann & Robert H. Lurie Children's Hospital of Chicago
Principal Investigators: Robert Listernick, MD; Stewart Goldman, MD
Phone: 773-975-8664
https://www.luriechildrens.org/en-us/Pages/index.aspx

Children’s Healthcare of Atlanta/Emory University
Principal Investigator: David S. Wolf, MD, PhD
Phone: 404-785-4688
https://www.choa.org/

Johns Hopkins Hospital
Principal Investigator: Jaishri Blakeley, MD
Phone: 410-502-6732; 410-955-8009
http://www.hopkinsmedicine.org/
http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/pediatric_oncology/cancer_types/neurofibromatosis.html

Massachusetts General Hospital
Principal Investigator: Justin Jordan, MD, MPH, FAAN
Phone: 617-724-8770
https://www.massgeneral.org/cancer-center/treatments-and-services/cancer-genetics/neuro-oncology

Dana Farber Cancer Institute
Principal Investigator: Nichole Ullrich, MD, PhD
Phone: 617-632-4595
https://www.childrenshospital.org/services/multidisciplinary-neurofibromatosis-program

Memorial Sloan Kettering Cancer Center
Principal Investigator: Matthias Karajannis, MD, MS
Phone: 212-639-3171; 212-717-3239
www.mskcc.org/pediatrics

Royal Children’s Hospital/ Murdoch Children’s Research Institute
Principal Investigator: Jonathan Payne, PhD
Phone: +61 3 8341 6226
http://www.rch.org.au/home/

Texas Scottish Rite Hospital
Principal Investigator: Steve Richards, MD
Phone: 214-559-8562
https://scottishriteforchildren.org/care/

University of California, Los Angeles
Principal Investigator: PhiOanh (Leia) NghiemPhu, MD
Phone: 310-794-6609; 310-825-5321
https://www.uclahealth.org/medical-services/neurosurgery/conditions-treated/multidisciplinary-neurofibromatosis-and-schwannomatosis

University of Minnesota
Principal Investigator: Christopher Moertel, MD
Phone: 612-365-8100; 612-626-5267
https://www.mhealthfairview.org/condition/brain-and-central-nervous-system-cancers-pediatric/treatments-and-services