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: 1. Assessing neurocognitive outcomes in a longitudinal study of children undergoing radiation for brain tumors (PI: Kathy Warren) 2. Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (PI: Brigitte Widemann) 3. Assessing psychosocial and behavioral outcomes in a Phase II trial of Vandetanib in children and adults with Gastrointestinal Stromal Tumor (GIST) (PI: Brigitte Widemann) 4. 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) 5. Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann) 6. Assessing adherence in a Phase I MEK inhibitor study for adults with NF1 (PI: Brigitte Widemann) 7. Designing and leading the QOL and pain studies as part of several international consortium clinical trials for children and adults with NF1 8. Investigating neurocognitive functions in two protocols of adolescents and adults with sickle cell anemia undergoing stem cell transplant (PIs: Courtney Fitzhugh, John Tisdale) 9. Evaluating the effects of whole-brain radiation on the neurocognitive functioning of adults with brain tumor metastases (PI: Kevin Camphausen) 10. 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 1. Developing and validating new or adapted measures to assess QOL, pain, GVHD symptoms, and distress 2. Evaluating approaches designed to improve coping with pain and medication adherence in patients with NF1 3. Creating and evaluating an advance care planning guide for adolescents and young adults 4. Developing a novel physical activity intervention to improve cognitive function in youth who received radiation for a brain tumor 5. Designing and assessing interventions to enhance stem cell donor preparedness 6. Developing a protocol to investigate an internet support group among parents of children with NF1 7. Developing an intervention to support bereaved parents 8. Sponsoring a multi-institutional study on characterizing and defining lone parenting 9. Assessing what parents want to know about autopsy 10. Evaluating methods of reducing social isolation in medically isolated pediatric patients 11. Exploring how/when to intervene with couples marriages/partnerships during the cancer trajectory B) Clinical In addition to supporting CCR research, the Core provides needed clinical services to patients, families, and staff as noted below. 1. Twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies 2. Wellness program for the inpatient and outpatient staff members and bereavement support 3. Ongoing psychotherapy for patients with cancer, NF1, and sickle cell disease 4. Comprehensive neuropsychological assessments, psychological reports with recommendations, and continued follow-up to help obtain appropriate educational, mental health, and rehabilitation services 5. Individualized interventions are conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens C) Professional Activities Collaboration within the CCR and the professional community has allowed the Core to position itself as a national and international resource as described below. 1. Core training program that offers clinical experiences, research opportunities, and didactic activities for postdoctoral fellows and graduate students in the behavioral sciences 2. Leadership roles in international research, clinical, and working groups such as the NF1 Consortium, Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration, and pediatric special interest groups for the American Psycho-oncology Society, the International Psycho-Oncology Society, the Society of Pediatric Psychology, and the Association for Contextual Behavioral Science. 3. Developing resources and therapeutic tools, made available, free of charge, to oncology centers throughout the world 4. Serving on editorial boards and as ad-hoc reviewers for numerous professional journals 5. Reviewing grant applications for the Children's Tumor Foundation 6. Presenting regularly at national and international scientific conferences 7. Serving as invited grand rounds speaker at several medical institutions and training academies 8. Serving as invited speaker at NF patient education conferences 9. Publishing widely in textbooks, and editing reference books for pediatric oncology clinicians on the psychiatric and psychological dimensions of pediatric cancer symptom management 10. Development of Pediatric Psychosocial Standards: In collaboration with The Mattie Miracle Foundation, and organized by the BSC, a think tank was held at the 10th annual American Psychosocial Oncology Society Conference held in Huntington Beach, CA, on February 14, 2013 to begin the process of developing pediatric psychosocial standards of care. Representatives from professional fields of practice that provide pediatric psycho-oncology care including social work, psychology, psychiatry, nursing, with representation from organizations including APOSW, SIOP, IPOS and APOS, as well as parent representatives are involved in this project. The primary goal is to develop standards of psychosocial care that can be utilized in all pediatric settings. This project is ongoing. 11. Hand Hygiene &Isolation Innovation Team: Developed in March 2012. The primary objectives are to 1) Promote new hand hygiene policy and 2) Design a process for implementing staff, research participant, and family isolation education. BSC member chaired the committee in planning I [heart] Clean Hands Day 2013, and is also chairing the Patient and Family Hand Hygiene Education subcommittee. 12. Created and maintain a website for Pediatric Psycho-oncology Professionals. http://pediatrics.cancer.gov/psycho-oncology External Funding 1. Dr. Wolters received a grant ($35,000) from the Childhood Brain Tumor Foundation (2012) to develop a physical activity intervention to improve cognitive late effects in children treated for brain tumors. 2. Drs. Wolters and Martin were awarded a 2-year grant ($250,000) from the Neurofibromatosis Therapeutics Acceleration Program (2013) to develop and validate patient-reported outcomes for individuals with NF1. 3. The Neurobehavioral Group receives funding ($15,000) from the NHLBI to support their involvement in two research protocols.
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