Co-Director, Multidisciplinary Neurofibromatosis Program; Neurologist, Department of Neurology; Director, Neurologic Neuro-Oncology; Associate Director, Clinical Trials, Neurofibromatosis Program; Attending Physician, Cancer and Blood Disorders Center
Co-Director, Multidisciplinary Neurofibromatosis Program; Neurologist, Department of Neurology; Director, Neurologic Neuro-Oncology; Associate Director, Clinical Trials, Neurofibromatosis Program; Attending Physician, Cancer and Blood Disorders Center
American Board of Psychiatry and Neurology (Child and Adolescent Neurology)
Professional History
Dr. Ullrich received her MD and PhD from Yale University School of Medicine. She completed her internship and residency in pediatrics, as well as a residency in child neurology, at Boston Children’s Hospital, where she went on to complete fellowships in neurologic neuro-oncology, and clinical investigation. She is now Professor of Neurology at Harvard Medical School. Dr. Ullrich has an active practice at both Boston Children’s Hospital and Dana-Farber Cancer Institute, caring for children with primary brain tumors while they are on active therapy and also for many years after they complete treatment. She has completed several clinical studies evaluating risk factors for neurologic late effects of cancer and for the neuro-oncological aspects of neurofibromatosis type 1 (NF1). Currently, Dr. Ullrich is site PI of the DoD funded Neurofibromatosis Clinical Trials Consortium, which sponsors clinical trials for NF1 and NF2-related schwannomatosis, including plexiform neurofibromas, brain tumors and cognitive difficulties in NF1 and vestibular schwannomas in NF2-schwannomatosis.
Publications
Effect of bevacizumab on non-target intracranial meningiomas and non-vestibular schwannomas in NF2-related schwannomatosis: NF104. View Abstract
Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey. View Abstract
Incidence of Hearing Loss in Patients With Neurofibromatosis Type 1 at a Tertiary Care Pediatric Hospital. View Abstract
Severe steroid-related neuropsychiatric symptoms during paediatric acute lymphoblastic leukaemia therapy-An observational Ponte di Legno Toxicity Working Group Study. View Abstract
The long-term impact of cerebellar tumor resection on executive functioning, anxiety, and fear of pain: A mixed methodology pilot study. View Abstract
Discontinuation of Antiseizure Medications in Patients With Brain Tumors. View Abstract
The Relationship Between Choroidal Abnormalities and Visual Outcomes in Pediatric Patients With NF1-Associated Optic Pathway Gliomas. View Abstract
Neurologic morbidity and functional independence in adult survivors of childhood cancer. View Abstract
Cerebral Vasculopathy in Children with Neurofibromatosis Type 1. View Abstract
Potential endpoints for assessment of bone health in persons with neurofibromatosis type 1. View Abstract
Multicenter, prospective, phase II study of maintenance bevacizumab for children and adults with NF2-related schwannomatosis and progressive vestibular schwannoma. View Abstract
Children's Oncology Group's 2023 blueprint for research: Cancer control and supportive care. View Abstract
A single-institution pediatric and young adult interventional oncology collaborative: Novel therapeutic options for relapsed/refractory solid tumors. View Abstract
Consensus-Based Best Practice Guidelines for the Management of Spinal Deformity and Associated Tumors in Pediatric Neurofibromatosis Type 1: Screening and Surveillance, Surgical Intervention, and Medical Therapy. View Abstract
Pediatric central nervous system tumor survivor and caregiver experiences with multidisciplinary telehealth. View Abstract
Genomic Patterns of Malignant Peripheral Nerve Sheath Tumor (MPNST) Evolution Correlate with Clinical Outcome and Are Detectable in Cell-Free DNA. View Abstract
Management of neurofibromatosis type 1-associated plexiform neurofibromas. View Abstract
MEK inhibitors for neurofibromatosis type 1 manifestations: Clinical evidence and consensus. View Abstract
Consensus Recommendations for Managing Childhood Cancer Survivors at Risk for Stroke After Cranial Irradiation: A Delphi Study. View Abstract
Updated diagnostic criteria and nomenclature for neurofibromatosis type 2 and schwannomatosis: An international consensus recommendation. View Abstract
Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists. View Abstract
Practical guidance for telemedicine use in neuro-oncology. View Abstract
Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1. View Abstract
Long-term neurocognitive and quality of life outcomes in survivors of pediatric hematopoietic cell transplant. View Abstract
Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation. View Abstract
Neurotoxic Effects of Childhood Cancer Therapy and Its Potential Neurocognitive Impact. View Abstract
Surveillance for subsequent neoplasms of the CNS for childhood, adolescent, and young adult cancer survivors: a systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group. View Abstract
Outcomes after first relapse of childhood intracranial ependymoma. View Abstract
The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research. View Abstract
Cabozantinib for neurofibromatosis type 1-related plexiform neurofibromas: a phase 2 trial. View Abstract
Are Some Randomized Clinical Trials Impossible? View Abstract
Visual outcomes following everolimus targeted therapy for neurofibromatosis type 1-associated optic pathway gliomas in children. View Abstract
Visual field outcomes in children treated for neurofibromatosis type 1-associated optic pathway gliomas: a multicenter retrospective study. View Abstract
A phase II study of continuous oral mTOR inhibitor everolimus for recurrent, radiographic-progressive neurofibromatosis type 1-associated pediatric low-grade glioma: a Neurofibromatosis Clinical Trials Consortium study. View Abstract
Neuro-Oncology Training for the Child Neurology Resident. View Abstract
Assessment of provider perspectives on otoprotection research for children and adolescents: A Children's Oncology Group Cancer Control and Supportive Care Committee survey. View Abstract
Novel predictive scoring system for morbid hypothalamic obesity in patients with pediatric craniopharyngioma. View Abstract
Trametinib for the treatment of recurrent/progressive pediatric low-grade glioma. View Abstract
Prescription Psychoactive Medication Use in Adolescent Survivors of Childhood Cancer and Association With Adult Functional Outcomes. View Abstract
Late morbidity and mortality in adult survivors of childhood glioma with neurofibromatosis type 1: report from the Childhood Cancer Survivor Study. View Abstract
The Use of MEK Inhibitors in Neurofibromatosis Type 1-Associated Tumors and Management of Toxicities. View Abstract
Genomics of MPNST (GeM) Consortium: Rationale and Study Design for Multi-Omic Characterization of NF1-Associated and Sporadic MPNSTs. View Abstract
Natural History and Management of Incidentally Discovered Focal Brain Lesions Indeterminate for Tumor in Children. View Abstract
Visual spatial learning outcomes for clinical trials in neurofibromatosis type 1. View Abstract
Optimizing Postoperative Surveillance of Pediatric Low-Grade Glioma Using Tumor Behavior Patterns. View Abstract
Cognition, ADHD Symptoms, and Functional Impairment in Children and Adolescents With Neurofibromatosis Type 1. View Abstract
Reproducibility of cognitive endpoints in clinical trials: lessons from neurofibromatosis type 1. View Abstract
Clinical spectrum of individuals with pathogenic NF1 missense variants affecting p.Met1149, p.Arg1276, and p.Lys1423: genotype-phenotype study in neurofibromatosis type 1. View Abstract
Multicenter, Prospective, Phase II and Biomarker Study of High-Dose Bevacizumab as Induction Therapy in Patients With Neurofibromatosis Type 2 and Progressive Vestibular Schwannoma. View Abstract
The Impact of Intraoperative Electrocorticography on Seizure Outcome After Resection of Pediatric Brain Tumors: A Cohort Study. View Abstract
Sixty years single institutional experience with pediatric craniopharyngioma: between the past and the future. View Abstract
Health Supervision for Children With Neurofibromatosis Type 1. View Abstract
From process to progress-2017 International Conference on Neurofibromatosis 1, Neurofibromatosis 2 and Schwannomatosis. View Abstract
A Review of Chronic Leukoencephalopathy among Survivors of Childhood Cancer. View Abstract
Correction: Expanding the clinical phenotype of individuals with a 3-bp in-frame deletion of the NF1 gene (c.2970_2972del): an update of genotype-phenotype correlation. View Abstract
Pain affect disrupted in children with posterior cerebellar tumor resection. View Abstract
Risk factors for chemotherapy-induced nausea in pediatric patients receiving highly emetogenic chemotherapy. View Abstract
Identifying clinical practice guidelines for the supportive care of children with cancer: A report from the Children's Oncology Group. View Abstract
Expanding the clinical phenotype of individuals with a 3-bp in-frame deletion of the NF1 gene (c.2970_2972del): an update of genotype-phenotype correlation. View Abstract
Peripheral neuropathy in children and adolescents treated for cancer. View Abstract
The management of childhood cancer survivors at risk for stroke: A Delphi survey of regional experts. View Abstract
2016 Children's Tumor Foundation conference on neurofibromatosis type 1, neurofibromatosis type 2, and schwannomatosis. View Abstract
The Effectiveness of a Hospital-Based School Liaison Program: A Comparative Study of Parental Perception of School Supports for Children With Pediatric Cancer and Neurofibromatosis Type 1. View Abstract
Children's at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1. View Abstract
Longitudinal assessment of late-onset neurologic conditions in survivors of childhood central nervous system tumors: a Childhood Cancer Survivor Study report. View Abstract
Genotype-Phenotype Correlation in NF1: Evidence for a More Severe Phenotype Associated with Missense Mutations Affecting NF1 Codons 844-848. View Abstract
Acupressure bands do not improve chemotherapy-induced nausea control in pediatric patients receiving highly emetogenic chemotherapy: A single-blinded, randomized controlled trial. View Abstract
School liaison program supporting children with neurofibromatosis type 1: a model of care for children with chronic disease. View Abstract
Liver Failure as the Presentation of Ornithine Transcarbamylase Deficiency in a 13-Month-Old Female. View Abstract
Visual and ocular motor outcomes in children with posterior fossa tumors. View Abstract
Brain tumors and epileptic spasms: Natural history and outcomes. View Abstract
Long-term neurologic health and psychosocial function of adult survivors of childhood medulloblastoma/PNET: a report from the Childhood Cancer Survivor Study. View Abstract
The path forward: 2015 International Children's Tumor Foundation conference on neurofibromatosis type 1, type 2, and schwannomatosis. View Abstract
A 15-Month-Old Girl Presenting With Clitoromegaly and a Chest Mass. View Abstract
A 15-Year-Old Girl With Sudden Onsent Reversible Neurologic Symptoms After Cranial Irradiation for Medulloblastoma. View Abstract
Phase II trial of pegylated interferon alfa-2b in young patients with neurofibromatosis type 1 and unresectable plexiform neurofibromas. View Abstract
Analysis of copy number variants in 11 pairs of monozygotic twins with neurofibromatosis type 1. View Abstract
Randomized placebo-controlled study of lovastatin in children with neurofibromatosis type 1. View Abstract
Neurocognitive outcomes in neurofibromatosis clinical trials: Recommendations for the domain of attention. View Abstract
Clinical Trial of the Protein Farnesylation Inhibitors Lonafarnib, Pravastatin, and Zoledronic Acid in Children With Hutchinson-Gilford Progeria Syndrome. View Abstract
Long-term visual outcomes of optic pathway gliomas in pediatric patients without neurofibromatosis type 1. View Abstract
Vitamin B12 Deficiency Presenting with Neurological Dysfunction in an Adolescent. View Abstract
Myxopapillary ependymomas in children: imaging, treatment and outcomes. View Abstract
MITF is a critical regulator of the carcinoembryonic antigen-related cell adhesion molecule 1 (CEACAM1) in malignant melanoma. View Abstract
CEACAM1-4L Promotes Anchorage-Independent Growth in Melanoma. View Abstract
Neurocutaneous Syndromes and Brain Tumors. View Abstract
Bacillus cereus Cerebral Abscess During Induction Chemotherapy for Childhood Acute Leukemia. View Abstract
Incidence, risk factors, and longitudinal outcome of seizures in long-term survivors of pediatric brain tumors. View Abstract
Risk of seizures in children with tectal gliomas. View Abstract
CEACAM1-3S Drives Melanoma Cells into NK Cell-Mediated Cytolysis and Enhances Patient Survival. View Abstract
Sirolimus for progressive neurofibromatosis type 1-associated plexiform neurofibromas: a neurofibromatosis Clinical Trials Consortium phase II study. View Abstract
Update from the 2013 International Neurofibromatosis Conference. View Abstract
Developing interventions for cancer-related cognitive dysfunction in childhood cancer survivors. View Abstract
Recurrence after gross-total resection of low-grade pediatric brain tumors: the frequency and timing of postoperative imaging. View Abstract
Gender as a disease modifier in neurofibromatosis type 1 optic pathway glioma. View Abstract
Cerebellar mutism after posterior fossa tumor resection: case discussion and recommendations for psychoeducational intervention. View Abstract
Long-term outcome of 4,040 children diagnosed with pediatric low-grade gliomas: an analysis of the Surveillance Epidemiology and End Results (SEER) database. View Abstract
CTF meeting 2012: Translation of the basic understanding of the biology and genetics of NF1, NF2, and schwannomatosis toward the development of effective therapies. View Abstract
Neurologic features of Hutchinson-Gilford progeria syndrome after lonafarnib treatment. View Abstract
Predictors of neoplastic disease in children with isolated pituitary stalk thickening. View Abstract
Calvarial defects and skeletal dysplasia in patients with neurofibromatosis Type 1. View Abstract
Moyamoya syndrome associated with neurofibromatosis Type 1: perioperative and long-term outcome after surgical revascularization. View Abstract
Children's Oncology Group's 2013 blueprint for research: cancer control and supportive care. View Abstract
Prevalence and predictors of prescription psychoactive medication use in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. View Abstract
Imaging characteristics of cerebrovascular arteriopathy and stroke in Hutchinson-Gilford progeria syndrome. View Abstract
Clinical trial of a farnesyltransferase inhibitor in children with Hutchinson-Gilford progeria syndrome. View Abstract
Academic women faculty: are they finding the mentoring they need? View Abstract
Morning glory disc anomaly in association with ipsilateral optic nerve glioma. View Abstract
168 Moyamoya Syndrome Associated with Neurofibromatosis Type 1 in Children. View Abstract
Psychoactive medication use and neurocognitive function in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor study. View Abstract
Sleep dysfunction in long term survivors of craniopharyngioma. View Abstract
Visual outcomes in children with neurofibromatosis type 1-associated optic pathway glioma following chemotherapy: a multicenter retrospective analysis. View Abstract
Craniofacial abnormalities in Hutchinson-Gilford progeria syndrome. View Abstract
[18F]-Fluorodeoxyglucose positron emission tomography in children with neurofibromatosis type 1 and plexiform neurofibromas: correlation with malignant transformation. View Abstract
Introduction. Neurologic sequelae of cancer in children. View Abstract
Neurocognitive dysfunction in survivors of childhood brain tumors. View Abstract
Discovery of asymptomatic moyamoya arteriopathy in pediatric syndromic populations: radiographic and clinical progression. View Abstract
Neuro-oncology training for the child neurology resident. View Abstract
Long-term clinical outcomes following treatment of childhood craniopharyngioma. View Abstract
Association of rapidly progressive moyamoya syndrome with bevacizumab treatment for glioblastoma in a child with neurofibromatosis type 1. View Abstract
Germinoma with malignant transformation to nongerminomatous germ cell tumor. View Abstract
Clinicopathologic study of glioblastoma in children with neurofibromatosis type 1. View Abstract
Pilot study of a novel computerized task to assess spatial learning in children and adolescents with neurofibromatosis type 1. View Abstract
Neurologic sequelae of brain tumors in children. View Abstract
Algal lipid bodies: stress induction, purification, and biochemical characterization in wild-type and starchless Chlamydomonas reinhardtii. View Abstract
A prospective, blinded analysis of A-PROTEIN (recoverin or CAR protein) levels in pediatric patients with central nervous system tumors. View Abstract
Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only. View Abstract
Intensive multimodality treatment for children with newly diagnosed CNS atypical teratoid rhabdoid tumor. View Abstract
CNS relapse of acute myelogenous leukemia masquerading as pseudotumor cerebri. View Abstract
Outcome of pediatric pineoblastoma after surgery, radiation and chemotherapy. View Abstract
Gender differences in research grant applications and funding outcomes for medical school faculty. View Abstract
"The choking game": self-induced hypoxia presenting as recurrent seizurelike events. View Abstract
Inherited disorders as a risk factor and predictor of neurodevelopmental outcome in pediatric cancer. View Abstract
Brainstem lesions in neurofibromatosis type 1. View Abstract
Moyamoya following cranial irradiation for primary brain tumors in children. View Abstract
Extracranial metastases of glioblastoma in a child: case report and review of the literature. View Abstract
Molecular genetics of pediatric central nervous system tumors. View Abstract
Phase II study of thalidomide and radiation in children with newly diagnosed brain stem gliomas and glioblastoma multiforme. View Abstract
Transverse myelitis after therapy for primitive neuroectodermal tumors. View Abstract
Craniopharyngioma therapy: long-term effects on hypothalamic function. View Abstract
Electroencephalographic correlate of juvenile Huntington's disease. View Abstract
Research during pediatric residency: predictors and resident-determined influences. View Abstract