bluuebunny/crossref_metadata_2025_split huggingface dataset:
SURG-03. VIRTUAL REALITY ASSISTANCE IN THE MANAGEMENT OF PEDIATRIC BRAIN TUMORS
Authors: Carai Andrea , Premuselli Roberto , Barba Matteo , Marasi Alessandra , Piccirilli Eleonora , Bua Antonella , Baldo Giada Del , De Benedictis Alessandro , D’Orazio Claudia , Cacchione Antonella , Savioli Alessandra , Marras Carlo E , Colafati Giovanna S , Mastronuzzi Angela 
Published: June 2024

Abstract

BACKGROUND
Virtual reality (VR) solutions are emerging as a useful adjunct to the armamentarium of the neurosurgeon. Surprisingly, little data is available in the literature regarding its utility in pediatric neurosurgical oncology. We hereby report our preliminary Institutional experience on the application of VR to surgical rehearsal in a series of pediatric brain tumors.

METHODS
Virtual models were obtained by the Surgical Planner (Surgical Theatre, Inc) in a series of 50 consecutive brain tumor cases treated at Bambino Gesù Children’s Hospital. Utility of VR was scored based on operators’ perception. Explored items included: planning, execution, resection, sparing of eloquent tissue, and overall surgical management. Scoring was performed using a customized Likert scale.

RESULTS
We prospectively collected 100 consecutive questionnaires from surgeons participating to brain tumor resection procedures. In a multivariate analysis VR was found to be significantly more beneficial in specific surgical settings. Leading surgeons (LS) judged VR significantly more useful in supratentorial tumors, in children younger than 10 years, and in planned partial resections. Assistant surgeons (AS) found VR more useful in supratentorial lesions, particularly in deep seated tumors. Both LS and AS perceived VR to be less useful for in embryonal tumors and epilepsy-associated gliomas (LEAT).

CONCLUSIONS
Our data suggest that VR technology is useful in the surgical management of children with brain tumors. There might be specific clinical scenarios in which the advantage of VR availability might have a significant clinical impact in planning and performing surgical resection.
NURS-04. MUSIC THERAPY WITH CAREGIVERS FOR THOSE WITH PEDIATRIC BRAIN CANCER AND BRAIN TUMORS: A CRITICAL REVIEW OF THE LITERATURE AND RECOMMENDATIONS FOR FUTURE PROGRAMS
Authors: Rizzo Deborah R 
Published: June 2024

Abstract

BACKGROUND
Caregivers for those with pediatric brain cancer and brain tumors face significant challenges. During the course of treatment, pediatric brain cancer and brain tumor patients face not just the physical consequences of treatments, but the neurological effects as well.

METHODS
This critical review of the literature examines the effects of Music Therapy on Caregivers, Caregivers for cancer patients, and Caregivers for pediatric cancer patients. A literature review was specifically chosen with the intention of making recommendations for future program planning. Subjects explored include the psychological, physical, and financial impacts of caregiving. Additional concepts include personality traits of Caregivers and multicultural considerations in caregiving. The topics of brain cancer and the use of Music Therapy with patients are also explored. Special attention is given to Music Therapy for Caregivers for those with pediatric brain cancer and brain tumors. Main points under this headline also include Caregiver stressors, similarities and differences in multicultural caregiving, and the limited research available to Caregivers.

RESULTS
At the time the literature review, no research had been conducted in the area of Music Therapy and Caregivers for pediatric brain cancer and primary brain tumors. Music Therapy was proven, however, to be a significant non-pharmaceutical intervention for several areas, including anxiety and pain management.

CONCLUSION
The conclusion drawn was that more research is needed with Music Therapy and this particular population. Additionally, a basic framework for a Music Therapy program for Caregivers for those with pediatric brain cancer and brain tumors has been provided with recommendations on the expansion of the program.
NURS-15. THE ROLE OF THE ADVANCED PRACTICE PROVIDER AND NURSES IN CLINICAL TRIALS
Authors: Schmus Cynthia , Briamonte Courtney Baker , Hoffman Carly , Holtzclaw Susan , McHugh Michele , Meyer Ashley , Raber Shannon , Rangan Kasey , Seidl Kenny , Strachan Marylynne , Waters Kaaren , Yeh-Nayre Lanipua , Higgins Micah 
Published: June 2024

Abstract

BACKGROUND
For many years clinical trials fell under the umbrella of medicine without much acknowledgement to the role of the nurse, both as advanced practice provider (APP) and staff nurse. Oncology continues to rank as one of the highest subspecialties when it comes to availability and participation in clinical trials. There remain multiple barriers to involvement including availability, lack of education, and medical mistrust. The specialized role and skill set of the APP and RN as part of the clinical trial team is important in overcoming these barriers.

METHODS
We distributed a survey to members of the Advanced Practice Provider and Nurse Investigator Committee (APPNIC), a group within the Pediatric Neuro-Oncology Consortium (PNOC), in order to identify themes, barriers to care, and opportunities for both the APP and RN within clinical trials. The use of a survey and interviews within our APPNIC cohort allowed us to collaborate on the nursing role, prioritize care in new and amended trials, and share unanticipated adverse effects and effective management.

RESULTS
APPs are actively involved with clinical trial enrollment, performance of diagnostic exams and procedures, education, and early recognition/management of adverse effects. There is also a growing theme of the APP as sub-investigator which provides value in facilitating consent, impacting accrual, determining eligibility, managing anticipated side effects. The role of the staff nurse in clinical trials is found to be vital in providing consistent communication/support, educating patients and families, and alleviating adherence and medical mistrust.

CONCLUSION
The APP and nurse have a specialized, relevant skill set, which when included as part of the multi-disciplinary team, has the ability to decrease barriers and increase overall delivery and safety of clinical trials. Our goal is to outline specific roles we feel should be standardized in the international arena for nursing involvement within clinical trials.
OTHR-08. CLINICAL MANAGEMENT OF TWO PEDIATRIC CASES OF INTRACRANIAL MESENCHYMAL TUMORS WITH FET::CREB FUSIONS
Authors: Lucas Bryony J , McGovern Susan L , Whitehead William E , Aldave Guillermo , Mohila Carrie A , Blessing Melissa M , Roy Angshumoy , Parsons D Williams , Chintagumpala Murali M , Okcu M Fatih , Lin Frank Y 
Published: June 2024

Abstract

BACKGROUND
Intracranial mesenchymal tumors (IMTs) with FET::CREB fusion are a newly described provisional entity lacking standard management options. This group of neoplasms occur in children and young adults, and is molecularly characterized by a FET family gene (most commonly EWSR1, rarely FUS) fused with a CREB family transcription factor (ATF1, CREB1, or CREM). Histologically, the Ki-67 index is typically low (&lt;5%) and only rarely elevated (15-20%). Treatment consists of surgical resection. Cases achieving gross total resection (GTR) are observed without adjuvant therapy, while subtotal resection (STR) is followed by radiation therapy. Regardless of resection status, patients are at risk for local recurrence.

METHODS
Case report.

RESULTS
We present two patients with IMTs harboring FET::CREB fusions. Patient 1 is a 12-year-old male with a known left choroid plexus lesion and hydrocephalus, who presented with acute loss of balance, headaches, and emesis. CT head revealed progression of the choroid plexus lesion with intraventricular hemorrhage and worsening hydrocephalus. Following GTR of the tumor, pathology revealed an IMT without high-grade features and a Ki-67 index of 5%. RNA-sequencing revealed an EWSR1::ATF1 fusion. In consideration of GTR and the tumor being low-grade, he is being followed with surveillance scans. Patient 2 is a 14-year-old male who presented with headaches and seizures and was found to have an enhancing left occipital lesion on MRI. Following GTR, pathology revealed an IMT with abundant mitotic figures (15 per 10 high power fields), increased Ki-67 index of 30-40%, and a FUS::CREM fusion. Due to the high-grade histopathology, he was treated with focal proton beam radiotherapy (5400 cGyRBE). An MRI three months post-therapy was negative for tumor recurrence.

CONCLUSIONS
We describe two adolescents with IMTs harboring FET::CREB fusions and their management, including one with high-grade histology managed with upfront radiation therapy, which has not been previously reported in the literature.
OTHR-12. GENERATING A COMPREHENSIVE INTERACTIVE PEDIATRIC BRAIN TUMOR VISUALIZATION PORTAL FROM MOLECULAR AND CLINICAL DATA DERIVED FROM TWO MULTI-INSTITUTIONAL PROTOCOLS (SJMB03, SJYC07) AND NON-PROTOCOL PATIENTS TREATED AT ST JUDE CHILDREN’S RESEARCH HOSPITAL
Authors: Dhanda Sandeep K , Lu Congyu , Sioson Edgar , Liu Anthony P Y , Upadhyaya Santhosh A , Bagchi Aditi , Chiang Jason , Orr Brent A , Gajjar Amar , Smith Kyle S , Northcott Paul A , Li Qian , Zhou Xin , Robinson Giles W 
Published: June 2024

Abstract

BACKGROUND
Pediatric central nervous system (CNS) tumors represent a diverse group of neoplasms with heterogeneous molecular and clinical characteristics. The need for well-organized, searchable datasets is paramount to enhance our understanding and improve the treatment approaches for these devastating diseases. To illustrate this, we have organized multifaceted data from patients into an interactive portal equipped with cutting-edge visualization tools.

METHODS
Clinical and molecular data from the SJMB03 and SJYC07 protocols and select published non-protocol St. Jude patients were collated and harmonized. A data dictionary was constructed to record demographic information, treatment details, histology, methylation classification, mutations, chromosomal aberrations, and outcomes. We implemented five visualization techniques - summary plots, sample view, scatter plots, sample matrix, and survival plots. These techniques are interconnected, enabling interaction and “crosstalk”.

RESULTS
Data from 710 patients with CNS tumors were incorporated: 386 Medulloblastomas (MB); 88 Atypical teratoid Rhabdoid Tumors (ATRT); 54 Ependymomas (EPN); 49 Pineoblastomas (PB); 28 Embryonal Tumors with Multilayered Rosettes (ETMR), 22 Infant-type hemispheric glioma (IHG), 16 High grade glioma (HGG), 13 Choroid Plexus Tumors (CPT); 11 CNS Sarcoma; 8 CNS tumor with BCOR internal tandem duplication (CNS BCOR); 6 CNS neuroblastoma FOXR2 activated (CNS NB FOXR2); 5 Low grade glioma (LGG); and 24 other entities or unclassified tumors. The portal features enabled the creation of custom cohorts. For example, patients with TP53 mutations (n=32; 15 MB, 7 CPT, 6 HGG, 1 CNS Sarcoma, 1 CNS NB FOXR2, 1 PB, 1 unclassified tumor) or DICER1 mutations (n=10; 7 PB, 2 CNS Sarcoma, and 1 ETMR) could be identified, cross-compared and analyzed adjusting for variables at users’ choice.

CONCLUSION
The integration of molecular and clinical data from multiple sources into an interactive visualization portal presents a comprehensive resource for research and clinical practice. Future work will focus on expanding the portal to integrate more cases/cohorts.
OTHR-13. A RETROSPECTIVE ANALYSIS OF A CLINICO-PATHOLOGICAL DATA ON CHILDHOOD AND ADOLESCENT MENINGIOMA- A SINGLE CENTRE EXPERIENCE
Authors: Shaikh Tanveer Ahmed , Yasin Shireena , Hargrave Darren , Tan Enrica , Szychot Elwira 
Published: June 2024

Abstract

BACKGROUND
Meningiomas in young patients remain poorly understood in terms of their origin, outcomes, and best treatment approaches. Current knowledge is limited to small studies and applying adult data, making dedicated research crucial for better understanding and management of these tumours.

METHOD
We reviewed meningioma cases (1990-2023) from our database, analysing demographics, tumour details, treatment, and outcomes. Neuroimaging and records confirmed tumour location and resection extent. Pathology was reviewed for alignment with WHO 2016 classification.

RESULTS
At GOSH, 60 patients with meningioma were treated over 33 years. Ages ranged from infants (142 days) to young adults (21 years) of which 51.7% were males. The commonest tumour location was at the skull base (31.6%), followed by the convexity (23.3%). Notably, 6.6% were previously exposed to therapeutic irradiation, and 20% were diagnosed with neurofibromatosis type 2 (NF-2) while 3 others had suspected mosaic NF-2. Among 55 cases with slides available for histopathology review, 26 (46.42%) were WHO grade-I, while 25 (44.64%) WHO grade-II and 4 (7%) WHO grade-III which had a 50% fatality rate. Complete surgical removal offered the best outcome, with only 3 out of 29 patients (10%) experiencing relapse as compared to 11 out of 17 (64.7%) in those who underwent incomplete resection alone. However, radiotherapy after incomplete surgery showed promise, with all 8 patients remaining relapse-free. Unfortunately, the single patient with a very aggressive tumour type (rhabdoid histology) progressed even after complete removal and irradiation.

CONCLUSION
In children and teens with meningioma, extent of initial surgical resection is considered the strongest independent prognostic factor, but radiotherapy after incomplete removal can improve relapse-free survival. Careful monitoring is crucial for those with partial resections, high-grade tumours, or NF2. Molecular data may bring light in the future on how the unique characteristics of paediatric meningiomas impact clinical status, management approach and survival.
OTHR-20. MINIMALLY-INVASIVE MOLECULAR DIAGNOSIS OF INFILTRATING BRAINSTEM GLIOMAS THROUGH CEREBROSPINAL FLUID CELL-FREE DNA SEQUENCING
Authors: Hill* Katherine , Giantini-Larsen* Alexandra , Hickman Richard A , Holle Bridget M , Ucpinar Burcin Agridag , Alano Tina , Doe-Tetteh Seyram , DiNapoli Sara , Riviere-Cazaux Cecile , Burns Terence C , Haque Sofia , Young Robert , Thakur Sunitha , Bale Tejus , Rosenblum Marc K , Benhamida Jamal , Dogan Snjezana , Vanderbilt Chad , Borsu Laetitia A , Ross Dara , Chang Jason , Zampieri Caroline Barbosa , Donzelli Maria , Lin Andrew , Dunkel Ira J , Kramer Kim , Sait Sameer Farouk , Souweidane Mark M , Greenfield Jeffrey P , Berger Michael F , Arcila Maria E , Ladanyi Marc , Mellinghoff Ingo K , Karajannis Matthias A , Miller Alexandra M 
Published: June 2024

Abstract

BACKGROUND
Accurate molecular diagnosis of infiltrating brainstem tumors, including diffuse midline gliomas and IDH mutant astrocytomas, is essential for prognostication and optimal therapy. Surgical biopsy of the brainstem carries risk of permanent neurological deficits and may yield insufficient or non-diagnostic tissue. We hypothesized that minimally invasive “liquid biopsy” analyzing circulating tumor cell-free DNA (cfDNA) in cerebrospinal fluid (CSF) could represent an alternative molecular diagnostic modality.

METHODS
We performed MSK-IMPACT, a New York State Department of Health authorized hybridization capture-based next-generation panel DNA sequencing clinical assay on 44 CSF samples from 37 unique patients with brainstem tumors. Ages at time of CSF collection ranged from 1–47 years (median: 29 years). For samples in which diagnostic alterations could not be detected, we performed a series of secondary analyses for known hotspot mutations such as H3F3A, IDH1/2, and BRAF, including manual review for mutant reads below the official clinical reporting threshold, as well as droplet digital PCR (ddPCR).

RESULTS
Among 44 samples included in this study, 10/44 (23%) samples had mutations detected by MSK-IMPACT using standard clinical calling criteria and 14 of the remaining 34 samples (41%) had supporting evidence of a diagnostically relevant mutation based on manual review. Testing by ddPCR was performed on 11 samples (based on DNA availability), uncovering 4 additional mutations. Overall positive diagnostic yield was 64% (28/44). In biopsied patients, CSF confirmed disease-defining mutations in 80% (16/20) of CSF samples, including H3F3A K28M (9/10; 90%) and IDH1/2 (5/6; 83%). Among 24 unbiopsied patients, a disease-defining mutation was identified in 60% (15/25) of CSF samples.

CONCLUSIONS
Analysis of CSF cfDNA in patients with brainstem tumors has a high diagnostic yield and obviates the need for tissue biopsy in a majority of patients. A tiered testing approach using next-generation sequencing and ddPCR assays helps maximize diagnostic information and sensitivity.
OTHR-21. DEVELOPING A NEURO-ONCOLOGY PROGRAM FOR ADOLESCENTS AND YOUNG ADULTS IN CANADA – THE CANON EXPERIENCE
Authors: Bennett Julie , Climans Seth , Das Sunit , Tsang Derek S , Massey Natalie , Tabori Uri , Hawkins Cynthia , Lim-Fat Mary Jane 
Published: June 2024

Abstract

BACKGROUND
Brain tumors are the leading cause of cancer-related death in adolescents and young adults (AYA). These tumors possess both pediatric-type and adult-type qualities, with up to 30% of gliomas harboring pediatric-type alterations. Specialized expertise and significant collaboration between pediatric and adult providers is needed to guide therapy for AYAs. To address this, we have developed the Canadian Adolescent and Young Adult Neuro-Oncology Network (CANON).

METHODS
In April 2021, we established a national virtual AYA tumor board integrating comprehensive molecular analysis of available tumors. Rounds included representatives from both pediatric and adult neuro-oncology, radiation oncology, neurosurgery, neuropathology and neuroradiology. We collected clinical data and recommendations from rounds.

RESULTS
In the first 2 years of rounds through CANON, 156 cases have been reviewed. Gliomas (108) accounted for most cases followed by medulloblastoma (18) and ependymoma (7). Sequencing was available in 47% of cases. Of those with molecular data available, the majority (36) had a pediatric-type alteration, followed by IDH mutation (10). Additional molecular analysis was recommended in 29% of cases presented. Of those with sequencing data available, 35% had a potentially targetable alteration identified. Despite this, only 8% were eligible for a clinical trial based on their diagnosis and age. Recurrent clinical questions included access to molecular analysis, use of “off-label” targeted agents, lack of clinical trial options for AYA patients and the practice variation in treatment of AYA tumors typically seen in childhood such as medulloblastoma and germ cell tumor.

DISCUSSION
Dedicated AYA rounds have highlighted many inequities in care of these patients, highlighting a need for inclusion of AYAs in clinical trials and further study of tumor biology and clinical outcomes of this cohort. AYAs with pediatric-type tumors would also benefit from management by dedicated physicians with expertise in these complex tumors.
OTHR-27. NARRATIVE MEDICINE APPLIED: A STUDY ELUCIDATING HOW ONE NEURO-ONCOLOGY TEAM GRAPPLES WITH DISTRESS
Authors: Riley Kathy , Toback Alison L , Knight Kelsey , Wimer Tammy , Coven Scott L , Tailor Jignesh K , Lion Alex H 
Published: June 2024

Abstract

BACKGROUND
Absorbing the cumulative weight of neuro-oncology patient stories in isolation leads providers to experience burnout and distress that some in our study called “debilitating.” Sands, Stanley, & Charon (2008) describe the field of pediatric oncology as one that “taunts professionals with the random unfairness” of grave childhood illness. They reason that clinicians in this demanding field may benefit from narrative training to build empathy, teamwork, and resilience. Narrative medicine is a rigorous and evidence-based field of study that utilizes the method of close reading of literature and art to engage providers in discussion and personal reflection. In narrative medicine workshops, participants immerse themselves in a text or image, contemplate their experiences and their relation to the text, write in response to a prompt, and share their writings with one another (Charon, et al., 2017).

METHODS
This study sought to understand how narrative medicine workshops conducted in a pediatric neuro-oncology clinical setting impacted individual team members, as well as inter- and intra-team relationships. Data collection for the study included pre- and post-surveys, qualitative interviews, and observation notes recorded by workshop facilitators. Researchers applied Clark’s (2014) framework of three distinct levels – relationship to oneself, relationship to the patient, and relationship to others on the team – to development of pre- and post-survey and qualitative interview questions.

RESULTS
Although quantitative data failed to demonstrate that the workshops reduced participant distress, qualitative research generated evidence that the very act of participating in narrative medicine workshops provided a safe space for providers to discuss job-related distress, breaking down hierarchical barriers and moving them toward what one participant called “professional intimacy.”

CONCLUSIONS
This research suggests that engaging in narrative medicine practice as a healthcare team may in and of itself alleviate distress and foster healing dialogue in a stressful clinical environment suffused with pain and loss.
OTHR-28. SUCCESS AND IMPACT IN 5 YEARS OF POST-MORTEM BRAIN TUMOR TISSUE PROGRAM: GIFT FROM A CHILD
Authors: Lyons Nicole , Nazarian Javad , Eze Augustine , Nourmohammadi Niku , Koptyra Mateusz , Resnick Adam , Minturn Jane , Frenkel Beth , Reingruber Sonora , Waanders Angela , Bornhorst Miriam , Williams Melissa , Monje-Deisseroth Michelle , Hysinger Jared , Liljensten Ann-Helen , Souweidane Mark , Greenfield Jeffrey , Campbell Cindy , Padilla Christopher , Smith Amy , Peck Sydney , Vitanza Nick , Leary Sarah , Stevens Jeff 
Published: June 2024

Abstract
The Gift From A Child post-mortem brain tumor tissue donation program was developed with patient families, care teams, and researchers to ensure patients can choose to donate brain tumor tissue regardless of logistics and circumstances. In the past 5 years, the program has developed a network of 7 Research Centers of Excellence (RCOE) that work with over 75 referring institutions, non-profit foundations, patient communities, and consortiums. Since the institution of this program, there has been an increase in the total number of donations. External donations also continue to grow as awareness builds, independent of new RCOEs joining the network. Program success is demonstrated by the increasing percentage of external donations and the number of new referral institutions each year. There has also been an overall increase in both total and percentage of donations from external referral sources, with an increasing majority of donations being external. From 2019 to 2023, the total number of external donations has jumped from 45 to 89 per year, reflecting an increase from 42% to 65% of the total donations. The referrals for external donations come from the treating neuro-oncology and general care teams, self-referrals from patient families directly, and from the patient family community on behalf of current patients. Resources are accessible via a 1-800 number, the GFAC website, and calls directly to RCOE or the GFAC team. Overcoming institutional and other logistical barriers ensures that all patients have access to GFAC. Patients who would otherwise be unable to donate are now represented in research that informs future treatments, leading to pre-clinical research that better represents the actual patient population. All data from donations via GFAC is shared with CBTN to ensure open access. This has led to an increase in successful projects and cell lines developed from the donated tissue.