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 as listed below. Support Intramural PIs: -Assessing neurocognitive outcomes in a longitudinal study of children undergoing radiation for brain tumors (PI: Kathy Warren) -Assessing neurocognitive outcomes in two new POB treatment protocols (CD19 CAR and CD22 CAR) for children with recurrent B-cell malignancies (PIs: Trey Lee, Terry Fry) -Assessing neurocognitive outcomes in a POB treatment protocol for children and young adults with non-neuroblastoma GD2+ solid tumors (PI: Crystal Mackall) -Assessing the QOL outcomes of children with progressive pediatric diffuse infiltrating brainstem gliomas and supratentorial high-grade gliomas in a trial of convection-enhanced delivery of IL-13 -Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (MTC) (PI: Brigitte Widemann) -Assessing psychosocial and behavioral outcomes in a Phase II trial of Vandetanib in children and adults with Gastrointestinal Stromal Tumor (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: Javed Khan) -Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann) -Assessing adherence in a Phase I MEK inhibitor study for adults with NF1 (PI: Brigitte Widemann) -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 in three protocols of 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) -Evaluating the feasibility of extending the KSADS-PL diagnostic interview to screen and evaluate young adults, ages 18-25 with cancer for psychiatric disorders (PI: Joyce Chung) -Designing the methodology, collecting data, and assisting with data analyses in multi-center treatment studies of pediatric cancer and graft-vs-host disease. Core-Initiated Investigations: -Developing and validating new or adapted measures to assess QOL, pain, GVHD symptoms, and distress -Evaluating approaches designed to improve coping with pain and medication adherence in patients with NF1 -Evaluating an advance care planning guide for adolescents and young adults -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 -Assessing interventions to enhance stem cell donor preparedness -Conducting a protocol to investigate an internet support group among parents of children with NF1 -Developing an intervention to support bereaved parents -Sponsoring a multi-institutional study on characterizing and defining lone parenting -Assessing what parents want to know about autopsy -Evaluating methods of reducing social isolation in medically isolated pediatric patients -Exploring how/when to intervene with couples marriages/partnerships during the cancer trajectory -Evaluating methods of preparation for amputation in individuals who underwent an amputation as a child. -Evaluating the feasibility and utility of an advance care planning guide, Voicing My Choices, with AYA -Assessing the feasibility and utility of PROMIS measures in pediatric cancer caregivers -Developing a protocol to assess the cognitive outcomes of children and adolescents enrolled in studies of MEK inhibitor drugs which targetthe Ras/MAPK pathway -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 Clinical In addition to supporting CCR research, the Core provides needed clinical services to patients, families, and staff as noted below. -Twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies -Wellness program for the inpatient and outpatient staff members and bereavement support -Ongoing psychotherapy for patients with cancer, NF1, 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 are conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens -Bereavement debriefings are provided as requested to staff throughout the Clinical Center in response to a patient or colleague death
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