CONNECT: Comprehensive Oncology Network Evaluating Rare CNS Tumors - Cures

Division Of Basic Sciences - Nci

Investigators

Linked publications, trials & patents

Abstract

Our NCI-CONNECT program includes a network of 33 institutions across the nation that help us enroll patients for clinical trials and studies. Our network was instrumental to the launch of two first-of-their-kind multi-center clinical trials after a landmark agreement with Medical Science & Computing that provides unprecedented opportunity for intramural and extramural collaboration on clinical trials for the network. We have formal partnership under an NCI Memorandum of Understanding with 9 patient advocacy groups to share educational content and raise awareness to improve outcomes for people with rare CNS tumors. We collaboratively host workshops, meetings, and webinars with partners to help share the patient perspective and have collaborated on seven events in the past three years, including a Survivorship Care in Neuro-Oncology Symposium virtually in June 2021 with over 200 attendees. NCI-CONNECT leadership also participates in advocacy lead events like the National Brain Tumor Society Quality of Life Research project convened in 2022 with the first workshop held in May 2023. The project brings together patient partners and stakeholders to establish a patient-centered brain tumor QoL research agenda. We host scientific workshops that bring together neuro-oncology experts and patient advocates worldwide to discuss the scientific progress and challenges of a selected specific rare CNS cancer type and find ways to improve therapies and develop new clinical trials. We have published papers from these workshops - four proceedings papers and one supplement - and changed cancer care guidelines; notably in November 2020, the NCCN guidelines for medulloblastoma were updated due to our scientific workshop report. Our NCI-CONNECT website is an educational tool for patients, caregivers, and professionals. From May 2022 to May 2023 the website exceeded 1 million page views and had 818,122 visits. NCI-CONNECT launched a Spanish-language version of its website in 2020 to reach a broader and underserved audience, and it averages 21,795 monthly visits. The top 10 countries by visits in 2022 included Mexico, Spain, Columbia, Argentina, and Peru. In March 2020, we published a new Managing Self-Care section and saw a 58 percent growth in page views to our Living with a Tumor content in 2021. Our monthly NCI-CONNECT e-newsletter is delivered to over 16,000 subscribers. Our private Facebook group NCI-CONNECT Community - the first ever for NCI - has 633 members; our YouTube Playlist has 35 videos, accumulating 31,416 views; and our Twitter account has 6,957 followers. All these platforms share educational and scientific information. We also developed a symptom-burden app called My STORI in 2021 (available in the Apple Store and Google Play Store) to facilitate patient symptom monitoring and tracking. Our NCI-CONNECT Clinic is dedicated to bringing together patients with similar rare CNS tumor types for special services. We have seen 421 patients as of January 2022, which is 49 percent of our entire NOB patient population. These patients receive genetic testing and counseling, a review of their diagnosis with advanced molecular testing, and participate in a support group meeting called CARES with a dedicated Health and Wellness Counselor. During COVID-19, NCI-CONNECT has added partnerships with local physicians to provide study drug, and telemedicine to expand access to care for our patients. Clinical studies launched and their progress through NCI-CONNECT include these treatment trials: a basket trial testing the immune checkpoint inhibitor nivolumab for adults with rare CNS cancers (17C0102), progress includes a positive interim analysis in the heavily pre-treated patient cohort and the presentation on these results won an abstract Award for Excellence in Rare CNS Disease at the 2021 SNO Annual Meeting; a first-in-human study of oral ONC206 in recurrent and rare primary CNS neoplasms (20C0069); a study of nivolumab for patients with recurrent IDH mutant gliomas including oligodendrogliomas (19C0006); and an immune monitoring study for patients with gliosarcoma and glioblastoma (21C0015). Clinical and observational studies include one retrospective study of Tissue Outcomes and Pregnancy Sub Study (P194734); two Natural History Studies, a natural history and specimen banking study for adults with rare central nervous system (CNS) cancers (16C0151), research using data from our Natural History Study received an Abstract Award for Excellence in Survivorship at the 2021 SNO Annual Meeting, and based on study data, the 2021 WHO diagnosis book for ependymoma was updated; an online survey of outcomes and risk for patients with adult CNS cancers (17CN141); a trial using immersive Virtual Reality (VR) at the time of clinical evaluation to improve psychological distress and anxiety (20C0065), which the interim results were published in March 2023 and support feasibility and acceptability of the intervention to target psychological symptoms for primary brain tumor patients; a study on managing Cancer And Living Meaningfully (CALM) therapy in individuals diagnosed with a primary brain tumor; and a Sleep Observation Study. NCI-CONNECT is conducting extensive biomarker research as a part of the ongoing immunotherapy basket clinical trial using the immune checkpoint nivolumab for rare CNS cancers. Collaborating with the Translational Immunology Program in the Neuro-Oncology Branch, extensive monitoring of individual patient's immune response treatment is underway using serial blood collections. NCI-CONNECT is further advancing science through the identification of new molecular subtypes of CNS tumors. For example, through intramural collaborations with the CCR Laboratory of Pathology team led by Dr. Kenneth Aldape, NCI-CONNECT importantly uncovered a new subtype of ependymoma characterized by MYCN amplification. Collaborations with other investigators in CCR led to the hypothesis that these cancers may be selectively sensitive to topoisomerase inhibitors, and a novel inhibitor, PLX-038, will be tested for these and other tumors harboring MYCN amplification in a clinical trial. NCI-CONNECT established a new collaboration with the Pediatric Oncology Branch, Radiation Oncology Branch, and the Surgical Neurology Branch to develop novel therapies for high-grade and radiation-induced meningioma. The NCI-CONNECT consortium has allowed us to expand our research efforts across the United States and provides a network for patient referrals to our NCI-CONNECT Clinics. We have led educational activities for NCI-CONNECT members several times per year, including virtual journal club sessions and live tumor board sessions that we videocast to NCI-CONNECT investigators in conjunction with our scientific workshops. In April 2020, we expanded our weekly multidisciplinary NIH Neuro-Oncology Tumor Board to include investigators and cases from participating NCI-CONNECT consortium sites, including 16 Comprehensive Cancer Centers. These educational efforts have been well-attended and engaging as exhibited by our data: 154 providers have presented 154 cases to participants from 47 external sites. In addition, NCI-CONNECT holds weekly lectures from visiting scholars and in May 2023 held its first in-person visiting scholar lecture on Survivorship in Neuro-Oncology with a Patient and Caregiver. Further, MyPART and NCI-CONNECT networks are collaborating on developing a neuro-oncology clinic for AYAs at the NIH Clinical Center. They held a collaborative workshop October 14, 2022, and since are holding regular meetings on clinical research ideas and survivorship care with plans for several clinical trials to be modified to expand to AYAs. With the information technology team led by Dr. Jason Levine, NCI-CONNECT is analyzing data from its patient outcomes surveys to dynamically display it publicly online.