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NIH Sep 1, 2021 | R21
Integration of multimodal cancer predisposition genetic counseling practices within the pediatric oncology setting
Institution: CHILDREN'S HOSP OF PHILADELPHIA
FOA Number: RFA-HG-20-049
Abstract
PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis. In this proposal, we will develop digital supports to expand the reach of genetic counselors, helping affected families to better understand testing and follow recommended guidelines that are shown to improve survival in patients predisposed to cancer.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R21Project Number:
R21HG011912Start Date:
Sep 1, 2021End Date:
Aug 31, 2023PROJECT TERMS:
acceptability and feasibility, Adolescent, Adopted, Affect, Age, Appointment, Area, base, Benefits and Risks, cancer diagnosis, Cancer Patient, cancer predisposition, cancer risk, care delivery, Caregivers, Caring, Child, Child Care, Childhood, cohort, Complex, connected health, Counseling, Development, digital, Digital health, digital healthcare, Distress, Education, Evaluation, Family, Family member, family support, follow-up, Future, Genetic, Genetic Counseling, genetic counselor, genetic testing, Goals, Guidelines, heritability, improved, improved outcome, indexing, innovation, Institution, International, Intervention, Knowledge, Lead, Leadership, Legal, Life Style, Longitudinal Studies, Malignant Childhood Neoplasm, Malignant Neoplasms, Measures, Modification, multi-site trial, multimodality, new technology, next generation sequencing, novel, Outcome, Outcome Measure, Participant, Patient-Focused Outcomes, Patients, Pediatric Oncology, Pediatric Oncology Group, pediatric patients, Physicians, post intervention, precision medicine, Predisposition, proband, programs, Randomized Controlled Trials, rapid growth, Recommendation, Reporting, Research, Research Infrastructure, research study, Resources, satisfaction, Services, standard care, standard of care, Surveys, Survivors, Syndrome, System, Technology, Test Result, Testing, Text, Text Messaging, Time, tool, Training, tumor