In February, members of the CTF Clinical Care Advisory Board (CCAB) met for a retreat in Atlanta, Georgia to discuss ongoing projects and prioritize goals for the next two years. The mission of the CCAB is to improve clinical care of patients with all forms of NF. Members include 15 leading NF clinicians, 3 patient advocates, and 2 CTF liaisons.
The 2020 CCAB goals defined at the February retreat are to adopt NF clinical care guidelines, create a virtual case conference review for clinicians, and begin development of a master clinician program. The 2021 CCAB goals include a focus on transition and adult care, and the appropriate use of MEK inhibitors for NF1 treatment. In addition, the use of telehealth for the provision of NF care was discussed as a 2021 goal, however, with the COVID-19 pandemic, many clinics were prompted to provide telehealth services. Ongoing CCAB projects include defining criteria and reviewing NF Clinic Network membership, organizing the Clinical Care Symposium, establishing new guidelines and review of CTF Clinical Research Awards, and developing and reviewing patient educational resources.
CTF appreciates the time and commitment of our CCAB members and their ongoing dedication to improve clinical care for NF.
Clinicians
- Scott Plotkin, MD, PhD (Chair), Massachusetts General Hospital
- Oliver Adunka, MD, Ohio State University
- Jaishri Blakeley, MD, Johns Hopkins University
- Gary Brenner, MD, PhD, Massachusetts General Hospital
- Jan Friedman, MD, PhD, University of British Columbia
- Bonnie Klein-Tasman, PhD, University of Wisconsin Milwaukee
- Laura Klesse, MD, PhD, UT Southwestern Medical Center
- Jennifer Janusz, PsyD, ABPP-Cn, Children’s Hospital Colorado
- Justin Jordan, MD, MPH, Massachusetts General Hospital
- Tena Rosser, MD, Children’s Hospital of Los Angeles
- Elizabeth Schorry, MD, Cincinnati Children’s Hospital
- Pamela Trapane, MD, UF Health Jacksonville
- Nicole Ullrich, MD, PhD, Boston Children’s Hospital
David Viskochil, MD, PhD (Chair, Emeritus), University of Utah- Kaleb Yohay, MD, NYU Langone Medical Center
Patient Representatives
- Alwyn Dias (NF1 patient representative)
- Reema Bogin (NF2 patient representative)
- Michele Holbrook (SWN patient representative)
CTF CCAB Liaisons
- Pamela Knight, MS
- Heather Radtke, MS, CGC
Click here to read Reema Bogin’s reflection on joining the CCAB.
