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 (Figure 1) across the nation that help us enroll patients for clinical trials and studies. Our network meets biannually to discuss program updates and new clinical trials for rare CNS tumors. Our consortium 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 continued formal partnership under an NCI Memorandum of Understanding with patient advocacy groups to share educational content and raise awareness to improve outcomes for people with rare CNS tumors. We have nine advocacy partnerships (Table 1) with world-renowned national and international organizations that collaboratively host workshops, meetings, and virtual educational events to help us share the patient perspective. We have collaborated with our partners on seven events in the past three years, including national and international conferences and educational webinars. Our network of investigators and advocacy partners helped us successfully host a Survivorship Care in Neuro-Oncology Symposium virtually in June 2021 with over 200 attendees, marking our seventh scientific or clinical outcomes workshops for NCI-CONNECT since 2018. The scientific workshops 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 collaborate to improve therapies and develop new clinical trials. We have published papers from these workshops - four proceedings papers in Neuro-Oncology Advances, including our Survivorship Care in Neuro-Oncology Symposium manuscript which has been endorsed by professional and advocacy organizations who are working with us on the recommendations from the symposium to impact survivorship outcomes for people with rare CNS tumors, and one supplement in Neuro-Oncology (Table 2) - 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 a sought-after educational tool by patients, caregivers, and professionals, especially during COVID-19 - from 2020 to 2021 it had a 98% growth rate in page views, with a total of 941,138 pages views and 539,320 unique website visits from January to December 2021. In March 2020, we published a new Managing Self-Care section for people living with brain and spine tumors and their caregivers. The content was added to our Living with a Tumor section, which had a 58 percent growth in page views in 2021. Our Spanish language version of the website, which launched in March 2020 to reach a broader and underserved audience, had a 7,300 percent increase in monthly visitors in one year. Our monthly NCI-CONNECT e-newsletter is delivered to 8,300 subscribers. Our private Facebook group NCI-CONNECT Community - the first ever for NCI - has 516 members; our YouTube Playlist in the NCI Channel has 35 videos, accumulating 18,728 views. Our Twitter account had 5,729 followers and over 1 million impressions (number of times our tweets were seen) in 2021. All these platforms share educational and scientific information. We also developed a symptom-burden app called My STORI in 2021, which is available in the Apple Store and Google Play Store, to facilitate patient symptom monitoring and tracking to impact quality of life. 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 part of NCI-CONNECT Clinics 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 NCI-CONNECT Clinic patients. We currently have 10 active NCI-CONNECT clinical studies and trials that have accrued 585 subjects in four years. Progress for FY21 includes a positive interim analysis in the heavily pre-treated patient cohort for our basket trial testing the immune checkpoint inhibitor nivolumab for adults with rare CNS cancers (17C0102). The presentation on these results won an abstract Award for Excellence in Rare CNS Disease at the 2021 SNO Annual Meeting. Our research using data from our Natural History Study received an Abstract Award for Excellence in Survivorship and an Abstract Award. Based on study data from our natural history and specimen banking study for adults with rare central nervous system (CNS) cancers (16C0151), the 2021 WHO diagnosis book for ependymoma was updated. Our other trials include an online survey of outcomes and risk for patients with adult CNS cancers (17CN141); a rare CNS cancer tumor and data repository (P194734); and targeted treatment trials including first-in-human study of oral ONC206 in recurrent and rare primary CNS neoplasms (20C0069) (based on preclinical work done in Dr. Gilbert's laboratory program), nivolumab for patients with recurrent IDH mutant gliomas including oligodendrogliomas (19C0006); and immune monitoring for patients with gliosarcoma and glioblastoma (21C0015). In addition, to address the needs of brain cancer survivors, we launched a trial using immersive Virtual Reality (VR) at the time of clinical evaluation to improve psychological distress and anxiety (20C0065) in March 2021, a study on managing Cancer And Living Meaningfully (CALM) therapy in individuals diagnosed with a primary brain tumor (000293) and a sleep observation study in patients with brain cancer (000085) both in June 2021. 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 for participation in our single-center studies. 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 have successfully continued to engage the investigators across the NCI-CONNECT consortium as exhibited by our data: 28 providers have presented 41 cases at 24 meetings with 60 to 70 participants. Through intramural collaborations with the pathology team led by Dr. Kenneth Aldape, NCI-CONNECT has submitted a request for its clinical trials data to the Genomic Data Commons to allow researchers access to important data for development of new research; with the information technology team led by Dr. Jason Levine, NCI-CONNECT is analyzing data from its patient outcomes surveys to find ways to dynamically display it publicly online. NCI-CONNECT shares a genetic counselor with the Moonshot-funded program MyPART and meets with them to share patient engagement and communications strategies and discuss other initiative needs. Advo *TRUNCATED*