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Clinical Care Advisory Board

The Clinical Care Advisory Board (CCAB) consists of a group of committed NF clinicians and patient representatives collaborating with CTF to identify ways to improve NF clinical care, educate patients and clinicians, and research relevant clinical care topics.

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Main Functions of the CCAB

Identify and share best practices regarding NF care

Develop and maintain a network of quality NF care centers (NFCN)

Encourage the use of the NF Registry to advance NF knowledge and research

Approval of CTF educational materials

Advise CTF on matters related to the clinical care of NF patients

Current CCAB Projects

The CCAB and colleagues continue efforts to assess the delivery of guideline-driven care. The first part of the study surveyed clinicians on their awareness and agreement with current NF care guidelines. A patient survey is available every May through the NF Registry and asks patients and caregivers about their experiences with receiving NF care. This kind of input from the NF community is essential to understanding how CTF can improve clinical care for NF patients.

Additionally, the CCAB is assessing ways to improve health equity and developing an approach to establishing best care practices. CCAB members are committed to clinician education and networking by organizing monthly case conferences for NF Clinic Network members and organizing a half-day clinical session at the NF Conference.

The CCAB team and its committees continue to meet at least monthly to collaborate on how to continue to improve clinical care for the NF community. CTF also involves CCAB members in feedback and approval of CTF patient resources.

Chairs
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Scott Plotkin, MD, PhD - Chair

Massachusetts General Hospital

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Laura Klesse, MD, PhD - Vice Chair

UT Southwestern Medical Center

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Clinician Members
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Oliver F. Adunka, MD, FACS

The Ohio State University

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Jaishri Blakeley, MD

Johns Hopkins University

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Gary Brenner, MD, PhD

Massachusetts General Hospital

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Jan Friedman, MD, PhD

University of British Columbia

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Jennifer Janusz, PsyD, ABPP-Cn

Children’s Hospital Colorado

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Justin Jordan, MD, MPH

Massachusetts General Hospital

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Bonnie Klein-Tasman, PhD

University of Wisconsin-Milwaukee

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Tena Rosser, MD

Children’s Hospital of Los Angeles

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Pamela Trapane, MD, MME

UF Health Jacksonville

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Nicole Ullrich, MD, PhD

Boston Children’s Hospital

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David Viskochil, MD, PhD

University of Utah

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Patient Representatives
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Alwyn Dias, MSW, ACC

NF1 Patient Representative

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Reema Bogin

NF2-SWN Patient Representative

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Dale Berg

SWN Patient Representative

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Contributors
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Vanessa Merker, PhD

Massachusetts General Hospital

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Katie Metrock, MD

University of Alabama at Birmingham

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Kaleb Yohay, MD

NYU Langone Medical Center

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CTF Staff
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Ledare Finley, MS, LCGC

Clinical Program Manager

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Scott Plotkin, MD, PhD
Massachusetts General Hospital
Laura Klesse, MD, PhD
UT Southwestern Medical Center
Oliver F. Adunka, MD, FACS
The Ohio State University
Jaishri Blakeley, MD
Johns Hopkins University
Gary Brenner, MD, PhD
Massachusetts General Hospital
Jan Friedman, MD, PhD
University of British Columbia
Jennifer Janusz, PsyD, ABPP-Cn
Children’s Hospital Colorado
Justin Jordan, MD, MPH
Massachusetts General Hospital
Bonnie Klein-Tasman, PhD
University of Wisconsin-Milwaukee
Tena Rosser, MD
Children’s Hospital of Los Angeles
Pamela Trapane, MD, MME
UF Health Jacksonville
Nicole Ullrich, MD, PhD
Boston Children’s Hospital
David Viskochil, MD, PhD
University of Utah
Alwyn Dias, MSW, ACC
NF1 Patient Representative
Reema Bogin
NF2-SWN Patient Representative
Dale Berg
SWN Patient Representative
Vanessa Merker, PhD
Massachusetts General Hospital

Vanessa L. Merker, PhD, is a health services researcher at Massachusetts General Hospital and an Assistant Professor in Neurology at Harvard Medical School. Her research program leverages information collected directly from patients and their family members to improve clinical trial design and health care delivery for rare, genetic diseases like neurofibromatosis and schwannomatosis. By using research methods such as in-depth qualitative interviews and patient-reported outcome measures, she seeks to highlight patients’ priorities and tailor clinical interventions to match their preferences.

Dr. Merker is also committed to partnering with NF families to help design and disseminate research. As Chair of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REINS) International Collaboration Patient Representative working group, she helps enable NF patients/caregivers to give feedback on the design of new research studies.

As a CTF Clinical Care Advisory Board Contributor, Dr. Merker helps measure how well clinical care guidelines are being adopted across the U.S., with the aim of improving the quality of healthcare for people with all forms of NF.

Katie Metrock, MD
University of Alabama at Birmingham

Katie Metrock, MD completed a pediatric hematology-oncology fellowship and neuro-oncology fellowship at Emory University. She is currently a faculty member at the University of Alabama at Birmingham (UAB) and Children’s of Alabama. Dr. Metrock is the Director of the UAB Pediatric Neuro-Oncology Fellowship program. She is the Director of the Alabama Center for Childhood Cancer and Blood Disorders Pediatric Neurofibromatosis Tumor Clinic.

Her research interests through the NF Clinical Trials Consortium (NTCTC) include the use of Poly-ICLC for Pediatric NF1-associated Low-Grade Gliomas and Selumetinib for the Prevention of Plexiform Neurofibroma Growth and Morbidity in Neurofibromatosis Type 1. She serves as the Co-Chair of the Quality Assurance Committee for the NFCTC and is a Course Co-Director of CTFs Virtual Case Conference.

She is also a CTF Clinical Care Advisory Board Contributor.

Kaleb Yohay, MD
NYU Langone Medical Center

Dr. Kaleb Yohay earned his medical degree at the University of Vermont in 1993.  He then completed pediatrics and neurology residency is at Johns Hopkins Hospital in Baltimore Maryland. While on faculty at Johns Hopkins, he cofounded the Johns Hopkins Neurofibromatosis Center.

Currently Dr. Yohay is an Associate Professor of Neurology and Pediatrics (Clinical) and Director of the NYU Langone Health Comprehensive Neurofibromatosis Center in New York City, one of the largest and most active neurofibromatosis clinics in the United States. His medical practice is devoted entirely to the care of children and adults with NF1, NF2 and schwannomatosis.  He is particularly interested in developing best practices for symptom screening, treatment, and age-appropriate anticipatory guidance for children and adults with neurofibromatosis and recently participated in the publication of the first clinical guidelines for the management of adults with neurofibromatosis 1.

Dr. Yohay’s research career has focused on the development and implementation of new therapeutics for neuro-oncologic and neuro-genetic disorders, including a gene therapy trial for the treatment of Late Infantile Neuronal Ceroid Lipofuscinosis, convection enhanced drug delivery for pontine glioma, and clinical trials for neurofibromatosis.

Dr. Yohay was full member of the CCAB from 2016-2022 and has been a key contributor on several CCAB projects since 2023.

Ledare Finley, MS, LCGC
Clinical Program Manager

Ledare Finley is the Clinical Program Manager at CTF and joined the Foundation in 2023. She is a licensed, board-certified genetic counselor with a BS in Cell Biology from the University of Tennessee and an MS degree in Genetic Counseling from the University of North Carolina at Greensboro. Ms. Finley has more than a decade of experience as a clinical and laboratory genetic counselor. As a clinical genetic counselor, she has served pediatric and adult patients in general genetics as well as patients in hereditary cancer genetics. She also has experience as a laboratory genetic counselor in clinical genomics and molecular genetics.

Ms. Finley’s goals are to expand and enhance the NF Clinic Network (NFCN). She serves as one of the CTF liaisons to the Clinical Care Advisory Board, supporting efforts to improve the care of NF patients.

Ms. Finley has been one of the CTF liaisons of the CCAB since 2023.