The Core staff scientists conduct behavioral research as part of collaborative medical protocols to support multiple principal investigators in the NCI and lead their own research studies by assessing psychosocial, quality of life, and/or neurocognitive outcomes in the following studies: 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); longitudinal study of children undergoing radiation for brain tumors (PI: Kathy Warren); Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed in a POB phase I CD22 CAR treatment protocol for children with recurrent B-cell malignancies (PI: Nirali Shah); Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed and revised based on the CD22 CAR results in the new POB phase I CD19/22 CAR treatment protocol for children with recurrent B-cell malignancies (PI: Nirali Shah); and 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 new protocol that is evaluating the effects of Bryostatin-1. This agent is being evaluated to determine its ability to increase surface expression of CD22 in patients with ALL to potentially improve response to anti-CD22 targeted therapies but also to assess its ability to improve cognitive late effects as this drug improves cognitive function in patients with Alzheimer's disease (PI: Nirali Shah); a trial of convection-enhanced delivery of IL-13 in children with progressive pediatric diffuse infiltrating brainstem gliomas and supratentorial high-grade gliomas(PI: Kathy Warren); a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (MTC) (PI: Brigitte Widemann); Phase II trial of Vandetanib in children and adults with Gastrointestinal Stromal Tumor (GIST) (PI: Brigitte Widemann); 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); 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.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 three 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). 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 grade brain tumors 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. Evaluating approaches designed to improve coping with pain in patients with NF1. 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. Developing an intervention to support bereaved parents. Exploring how/when to intervene with couples marriages/partnerships during the cancer/NF1 trajectory. 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. Determining the feasibility, utility, and impact of Voicing My Choices in AYA living with cancer and other chronic illnesses. Determining what patient reported outcomes pediatric oncology providers find most useful and their preferences for obtaining results. Assessing the use of pain assessments and interventions among pediatric psychologists. Evaluating medical and psychosocial practice guidelines for the assessment and surveillance follow-up of pediatric hematopoetic stem cell donors. 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 their about participation in psychosocial clinical trials to better design studies that are meaningful to patients. Twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies, Ongoing psychotherapy for patients with cancer, NF1, immune deficiencies and sickle cell disease, Comprehensive neuropsychological assessments, psychological reports with recommendations, and continued follow-up to help obtain appropriate educational, mental health, and rehabilitation services, Individualized interventions conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens, Organize an annual Sibling Day to support siblings of pediatric patients, Implementing a mindfulness-based wellness series for POB fellows and research nurses across NIH institutesWellness program for the inpatient and outpatient staff members and bereavement support, Created and maintain a website for pediatric psycho-oncology professionals http://pediatrics.cancer.gov/psycho-oncology
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