The children's brain tumor network (CBTN) - Accelerating research in pediatric central nervous system tumors through collaboration and open science.

Pediatric brain tumors are the leading cause of cancer-related death in children in the United States and contribute a disproportionate number of potential years of life lost compared to adult cancers. Moreover, survivors frequently suffer long-term side effects, including secondary cancers. The Children's Brain Tumor Network (CBTN) is a multi-institutional international clinical research consortium created to advance therapeutic development through the collection and rapid distribution of biospecimens and data via open-science research platforms for real-time access and use by the global research community. The CBTN's 32 member institutions utilize a shared regulatory governance architecture at the Children's Hospital of Philadelphia to accelerate and maximize the use of biospecimens and data. As of August 2022, CBTN has enrolled over 4700 subjects, over 1500 parents, and collected over 65,000 biospecimen aliquots for research. Additionally, over 80 preclinical models have been developed from collected tumors. Multi-omic data for over 1000 tumors and germline material are currently available with data generation for > 5000 samples underway. To our knowledge, CBTN provides the largest open-access pediatric brain tumor multi-omic dataset annotated with longitudinal clinical and outcome data, imaging, associated biospecimens, child-parent genomic pedigrees, and in vivo and in vitro preclinical models. Empowered by NIH-supported platforms such as the Kids First Data Resource and the Childhood Cancer Data Initiative, the CBTN continues to expand the resources needed for scientists to accelerate translational impact for improved outcomes and quality of life for children with brain and spinal cord tumors.

Quantifying Pediatric Facial Palsy: : Using Digital Image Correlation to Objectively Characterize Pediatric Facial Symmetry.

OBJECTIVE: This study introduces digital image correlation (DIC) as a novel technology to objectively quantify pediatric facial symmetry. DESIGN: Descriptive cohort study of patients' facial symmetry as measured by DIC. SETTING: Academic tertiary care hospital. PATIENTS: 9 of 12 identified facial palsy and 13 of 26 identified control subjects participated. INTERVENTIONS: DIC was used to quantify facial strain and symmetry as patients made the 5 standard Sunnybrook facial expressions. Each subject was evaluated according to the Sunnybrook scale by 4 evaluators, 3 plastic surgeons, and 1 occupational therapist. MAIN OUTCOME MEASURE: The percentage asymmetry values were calculated and compared between the facial palsy and control groups using both DIC and Sunnybrook. RESULTS: Using DIC, facial palsy subjects had 32.99% asymmetry compared with 14.84% in controls (P < .01). Using Sunnybrook, facial palsy subjects had 24.11% asymmetry compared to 3.87% in controls (P < .01). The 2 metrics were positively correlated (P < .01). There was significant variability among the Sunnybrook evaluators (P = .02). CONCLUSIONS: DIC is a novel technique of objectively quantifying facial motion of the animated face. As surgical and medical approaches toward facial palsy expand, it is essential to have a means to compare results and improve patient outcomes.

Influence of Standardized Orientation on Patient Perception of Perioperative Care Following Alveolar Cleft Repair: A Survey Based Study of Patients Treated in a Large Academic Medical Center.

OBJECTIVE: This study aims to better understand patient-reported outcomes for iliac bone grafting surgery for alveolar cleft repair and to determine how standardizing perioperative patient instruction affects patient-reported outcomes. DESIGN: Retrospective survey-based assessment of patients undergoing iliac bone grafting with and without hospital-based systems standardization. SETTING: Academic tertiary care hospital. PATIENTS: Of the 195 identified patients, 127 participated. INTERVENTIONS: Survey on pain and satisfaction regarding iliac bone grafting surgery. MAIN OUTCOME MEASURES: Survey answers measured patient opinions about the surgery. Answers of the pre- and poststandardization patients were compared to determine the effect of standardizing patient instructions. RESULTS: Patients rated their satisfaction with the surgery and recovery a 4.5 and 4.4 out of 5, respectively. They rated their overall pain in the hospital a 5.5 out of 10 (4.9 in the mouth, 5.7 in the hip). Patients were discharged an average of 1.2 days after surgery and could return to normal daily activity in 6.1 days. Poststandardization patients were more likely to adhere to instructions regarding use of an antibacterial mouthrinse and a protective oral splint. CONCLUSIONS: Patients were highly satisfied with the iliac bone grafting procedure and the recovery and reported only moderate levels of postoperative pain. Implementing standardized patient instructions may not affect patient satisfaction or pain severity, but it significantly increased patient adherence to physician instructions.