CONNECT: Comprehensive Oncology Network Evaluating Rare CNS Tumors - Cures

Division Of Basic Sciences - Nci

Investigators

Linked publications & trials

Abstract

Our progress includes expanding our NCI-CONNECT network of researchers and institutions committed to the program's mission by utilizing our existing Brain Tumor Trials Collaborative (BTTC) network. Our network includes 33 institutions across the nation, serving a widespread geography and underserved populations. Our members meet biannually to discuss program updates, new clinical trial designs and concepts for rare CNS tumors. Due to COVID-19, we held our two-day 2020 annual meeting virtually in July and August and announced a recent landmark agreement with Medical Science & Computing that provides unprecedented opportunity for intramural and extramural collaboration on state-of-the art clinical trials for the network. The second meeting is held each November in conjunction with the annual meeting for the Society for Neuro-Oncology (SNO), the largest international professional organization in neuro-oncology. We have continued formal partnerships 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 with world-renowned national and international organizations that collaboratively host workshops, meetings, and virtual educational events to help us share the patient perspective. We also communicate via Slack, a newsletter and quarterly calls. Our network of investigators and advocacy partners have helped us successfully host or co-host six scientific or clinical outcomes workshops and an international patient advocacy summit at NIH. The scientific workshops brought together neuro-oncology experts and patient advocates worldwide to discuss the scientific progress and challenges of a selected rare CNS cancer and find ways to collaborate to improve therapies and develop new clinical trials. We also pivoted seamlessly during COVID-19 to co-host with SNO an international scientific symposium, which had over 250 attendees. These workshops are an instrumental method to develop roadmaps and long-term strategies with the goal of improving patient outcomes. We have published papers from these workshops and changed cancer care guidelines. These publications include three proceedings papers, with more in progress, and a fourth paper that showed how including patient functional and symptom data on clinical trials can help determine the benefit of a trial. Our efforts in education and outreach have been extremely successful. Our NCI-CONNECT website is a sought-after educational tool by patients, caregivers, and professionals, receiving about 30,000 monthly visitors with 28,000 being unique. It also receives over 45,000 page views monthly. In March 2020, we published a new Managing Self-Care section for patients and caregivers. It was uniquely developed by our Health and Wellness Counselor who also shares positive coping strategy videos on our social media channels weekly. These videos have been impactful - generating close to 2,000 views - during the current COVID-19 crisis. Also in March 2020, we launched a Spanish language version of the website to reach a broader and underserved audience. As of March 2021, it receives over 12,000 monthly visits - a 1,137 percent increase in monthly visitors in one year. Our monthly NCI-CONNECT e-newsletter publishes at least three new articles each month and is delivered to over 5,000 subscribers. We developed the first NCI private Facebook group and have 396 members. We have a dedicated YouTube Playlist in the NCI Channel and have produced about 20 videos focused on NCI-CONNECT clinic, studies and educational information. We also reacted quickly to the changes in medical practice during COVID-19 and held two virtual educational events on telemedicine. One focused on patients in partnership with Wilmot Cancer Institute at the University of Rochester Medical Center, a renowned center that reaches diverse and rural populations, and the second focused on providers in partnership with SNO. We also collaborate with SNO to distribute NCI-CONNECT educational materials and promote awareness of scientific efforts to the neuro-oncology community. Our NCI-CONNECT Clinic, established in January 2018, is dedicated to bringing together patients with similar rare CNS tumor types for special services. About 45 percent of our entire NOB patient population has a rare CNS tumor, and we have seen 289 patients as part of NCI-CONNECT Clinics as of March 2020. 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 have expanded our CARES support group meetings virtually and offered virtual consultations to patients and caregivers. We currently have six active NCI-CONNECT clinical studies and trials and accrued over 390 subjects in three years. These include: a natural history and specimen banking study for adults with CNS cancers (16C0151); an online survey of outcomes and risk for patients with adult CNS cancers (17CN141); a basket trial testing the immune checkpoint inhibitor nivolumab for adults with rare CNS cancers (17C0102); a rare CNS cancer tumor and data repository (P194734); targeted treatment trials including a first-in-human study of ONC206 in recurrent and rare primary CNS neoplasms (20C0069) and nivolumab for patients with recurrent IDH mutant gliomas including oligodendrogliomas (19C0006). 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, and in June 2021, a study on managing Cancer and Living Meaningfully (CALM) therapy in individuals diagnosed with a primary brain tumor. Notably, NCI-CONNECT has launched five targeted treatment trials, including the first-in-human trial of ONC206 (based on preclinical work done in Dr. Gilbert's laboratory program) in recurrent and rare primary CNS neoplasms and established two first-ever multi-center studies across the consortium with a vendor for site payments under an S4 contract. Additionally, as a result of trial 16CN005, temozolomide and lapatinib were added to NCCN guidelines for treatment at recurrence of ependymoma with level of evidence as 2B, representing the first prospective trial evaluating this treatment in adults. Based on analysis from trial 16C0151, a new subset of spinal cord ependymoma was identified harboring a MYCN amplification associated with worse prognosis. These data, along with similar findings by the Pfister group, validates this finding and it will be considered as a subtype in the upcoming C-IMPACT and WHO classifications. Our 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 Clinic for participation in our single-center studies. To encourage referrals and further collaboration, 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. Most recently, 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.