Support Intramural PIs: Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed on a CD22 CAR T-cell trial and phase I CD19/22 CAR treatment protocol for children with recurrent B-cell malignancies (PI: Nirali Shah), Developing the neurotoxicity assessment for a new Phase I Dose Escalation Study of Anti-FGFR4 Chimeric Antigen Receptor T Cells in Children and Young Adults with Recurrent or Refractory Rhabdomyosarcoma (PI: Javed Kahn),Planning the cognitive assessment for a protocol that is evaluating the effects of Bryostatin-1 (PI: Nirali Shah), Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (MTC), Assessing psychosocial and quality of life outcomes in a Phase II trial of DNA methyl transferase inhibitor, SGI-110, in children and adults wild type GIST, pheochromocytoma and paraganglioma associated with succinate dehydrogenase deficiency and HLRCC-associated kidney cancer (PI: John Glod), Assessing quality of life outcomes in a Phase II trial of the Mitogen Activated Protein Kinase Kinase (MEK1/2) inhibitor Selumetinib (AZD6244 hydrogen sulfate) in Patients with Neurofibromatosis Type 1 (NF1) related Gastrointestinal Stomal Tumors (GIST) (PI: Brigitte Widemann), Identifying patient and parent attitudes toward the use of next generation sequencing (NGS) for diagnosing and managing cancer and the return of results and incidental findings (PI: Rosie Kaplan), Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann), Assessing patient-reported outcomes (PRO) of pain, physical function, and quality of life in a registration phase II clinical trial of selumetinib in children with NF1 and inoperable plexiform neurofibromas, contributing to the statistical analysis plan, and preparing the PRO data for FDA review, Assessing patient-reported outcomes of pain, physical function, and quality of life in a phase II clinical trial of selumetinib in adults with NF1 and inoperable plexiform neurofibromas, Assessing medication adherence in a phase II clinical trial of selumetinib in children with NF1 and inoperable plexiform neurofibromas, Designing and leading the QOL and pain studies as part of several international consortium clinical trials and POB treatment protocols for children and adults with NF1, Investigating neurocognitive functions, pain, and quality of life in several protocols of children, adolescents, and adults with sickle cell anemia undergoing stem cell transplant (PIs: Courtney Fitzhugh, John Tisdale), Evaluating the effects of whole-brain radiation on the neurocognitive functioning of adults with brain tumor metastases (PI: Kevin Camphausen), Assessing the feasibility and utility of PROMIS measures in pediatric cancer caregivers (PI: Margaret Bevans), Assessing psychosocial characteristics of children in a natural history study of clinical factors in children with chronic GVHD (PI: Steven Pavletic), Assessing a core set of patient-reported outcomes to assess children, adolescents, and adults with rare solid tumors as part of the POB natural history rare tumor initiative (PI: Jaydira Del Rivero), Planning two cognitive test batteries for a natural history study to examine the cognitive, social, and emotional development of children and young adults with RASopathies (PI: Marielle Yohe), Planning a neurocognitive evaluation to assess for neurotoxicities on a first-in-human phase I trial to investigate the safety, tolerability, pharmacokinetics, biological and clinical activity of metarrestin in subjects with metastatic solid tumors (PI: Udo Rudloff) Support of Consortia Studies including assessing pain and QOL in children and adults with NF1 and plexiform neurofibromas and malignant peripheral nerve sheath tumors on clinical trials being conducted in the DOD NF Clinical Trials Consortium and assessing the QOL outcomes of children with progressive pediatric diffuse infiltrating brainstem gliomas on a consortium clinical trial evaluating the combination therapy of Marizomib/Panobinostat. Core-Initiated Investigations Evaluating the psychosocial support needs of parents before and after the death of their child. Assessing the barriers and facilitators to incorporating palliative and bereavement care worldwide. Evaluating the feasibility and efficacy of an enhanced mindfulness intervention for children with high risk cancer and their caregivers. Sponsoring multi-institutional studies to develop and validate new or adapted measures to assess QOL, pain, cGVHD symptoms, and distress. Developing an electronic distress screen for patients/caregivers alongside a provider summary report to facilitate referrals. Accepted into and working with the FDA's Drug Development Tool Qualification Program to modify and validate current patient-reported outcome measures of pain intensity and pain interference for use in NF1 clinical trials through a two-phase research protocol. Conducting a randomized controlled trial to evaluate a novel physical activity intervention to improve cognitive late effects in youth who received radiation for a brain tumor. Conducting a protocol to assess the cognitive outcomes of children and adolescents enrolled in studies of MEK inhibitor drugs which target the Ras/MAPK pathway. Conducting a randomized controlled trial for evaluate an intervention designed to improve coping with pain in patients with NF1 and plexiform neurofibromas. Using electronic monitoring technology to assess medication adherence among pediatric and adult patients on clinical trials for NF. Assessing interventions to enhance stem cell donor preparedness. Evaluating an intervention to support bereaved parents. Developing a communication tool for physicians on discussing autopsy. Exploring how/when to intervene with couples marriages/partnerships during the cancer/NF1 trajectory. Evaluating methods of preparation for amputation in individuals who underwent an amputation as a child. Conducting an NIH-wide Needs Assessment Survey for adolescents and young adults (AYA) with various medical conditions to guide the development of AYA programs and services at the NIH. Evaluating the feasibility and utility of an advance care planning guide, Voicing My Choices, with AYA in Australia and in Brazil. Determining the feasibility, utility, and impact of Voicing My Choices in AYA living with cancer and other chronic illnesses such as HIV/AIDS. Determining what patient reported outcomes pediatric oncology providers find most useful and their preferences for obtaining results. Evaluating medical and psychosocial practice guidelines for the assessment and surveillance follow-up of pediatric hematopoetic stem cell donors. Determining staffing and services available to implement psychosocial standards in pediatric cancer centers. Determining integration of pediatric palliative care concepts into existing pediatric oncology programs. Evaluating integration of bereavement psychosocial standards of care into pediatric oncology programs. Developing a patient engagement survey to assess the thoughts of adults and children with NF, and the parents of these children, and about their participation in psychosocial clinical trials to better design studies that are meaningful to patients.
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