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TRAIN Newsletter — December 2022

TRAIN Newsletter — December 2022

TRAIN eNews is delivered directly to organizations that take part in The Research Acceleration and Innovation Network (TRAIN). TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach—what some refer to as “venture philanthropy”—to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the medical research system. Visit the TRAIN application page to learn more about becoming a TRAIN organization.

News From FasterCures

  • Watch Videos from the Milken Institute Future of Health Summit and Partnering for Patients Forum On Demand
    The Milken Institute hosted the Future of Health Summit and Partnering for Patients Forum in Washington, DC, December 6–8, 2022. This in-person event convened the world’s leading minds to discuss the most significant health challenges and identify the priorities that will drive better health outcomes for individuals and patient communities. The three-day Future of Health Summit kicked off with our Partnering for Patients Forum, shining a light on the latest biomedical innovation advances and centering on the needs and ideas generated by and for the patient community.

  • New FasterCures Publication: The Current Landscape of the Science of Patient Input
    In November, FasterCures published The Current Landscape of the Science of Patient Input, a report summarizing an assessment of biomedical R&D efforts to engage patients in research. The report found that considerable strides had been made in advancing the science of patient input, largely driven by federal legislative and regulatory guidance changes and an acceptance by stakeholders, especially industry, that engaging patients is the new normal. The report also identifies persistent gaps where further action is needed to continue driving progress forward.

  • FasterCures Relaunches First Cup with FasterCures
    FasterCures relaunched its First Cup policy breakfast series in September. The most recent event covered “The Future of Biomedical Research and Innovation: The Role of ARPA-H” with guest speaker Adam Russell, DPhil, acting deputy director of ARPA-H. During the breakfast, Russell spoke on the current state of implementing ARPA-H at the National Institutes of Health (NIH), and participants had the opportunity to discuss considerations for the entity’s success and opportunities for stakeholders to engage.

  • TRAIN Research Roadmaps and Accelerating Breakthrough Cures Webinar
    As part of a TRAIN webinar series, FasterCures and the National Multiple Sclerosis (MS) Society led a discussion on November 3, 2022, aimed at highlighting how patient organizations and collaborators can develop and utilize a research roadmap to engage researchers and other stakeholders to maximize coordination efforts and accelerate the development of breakthrough cures. The National MS Society highlighted the use of its “Pathways to Cures for MS: A Research Roadmap” to establish three pathways to MS cures, drive consensus across the global MS community, and create an implementation plan to advance pathways and achieve goals. View the recording and accompanying summary.

  • FasterCures Continues Its ‘Advances in Science’ Webinar Series
    FasterCures’ “Advances in Science” webinar series kicked off this summer, featuring esteemed scientists and medical thought-leaders for discussions centered on key issues, lessons learned, and opportunities to transform the health landscape. In October, Robert W. Eisinger, PhD, acting deputy director for program coordination, planning, and strategic initiatives at the NIH, hosted a conversation with guest speaker Michael S. Saag, MD, professor emeritus of medicine, microbiology and public health at the University of Alabama at Birmingham on “Lessons Learned from the HIV/AIDS Pandemic Applied to COVID-19.” View webinar recordings and sign up to receive updates on upcoming webinars in the series.

  • FasterCures to Host Partnership Maturity Model Interactive Workshop
    FasterCures will host the Research Partnership Maturity Model Interactive Workshop in Santa Monica, California, on March 21, 2023. The Research Partnership Maturity Model is a framework created by FasterCures to enable patient organizations that support or conduct research to understand their assets and capabilities as research partners and improve their ability to advance research. The workshop will convene patient organizations and related stakeholders for a series of interactive panel sessions and activities that will lead participants through an assessment of their organizational research partnership capacity and guide them toward setting objectives for continued organizational growth. More details, including a link to register for the event, will be sent to TRAIN organizations and other members of the FasterCures community soon.

TRAIN Organization Updates

  • TRAIN Welcomes Two New Members
    FasterCures is excited to announce two new TRAIN members: the Castleman Disease Collaborative Network (CDCN) and the Colorectal Cancer Alliance. CDCN is an organization dedicated to accelerating research and treatment for Castleman disease, a disease at the intersection of cancer and autoimmunity, and revolutionizing biomedical research to cure many more diseases. The Colorectal Cancer Alliance seeks to empower a nation of allies who work with the alliance to provide support for patients and families, caregivers, and survivors; raise awareness of preventive measures; and inspire efforts to fund critical research for colorectal cancer.

  • CURE Epilepsy Grantees Research Genetic Determinants of Sudden Unexpected Death in Pediatrics
    In a new study funded by the CURE Epilepsy grant program, researchers used state-of-the-art genetic techniques, thorough family history and cause of death analysis, and parental genetic information to explore the connection between the genes associated with epilepsy and sudden unexpected death in pediatrics (SUDP). The study found some evidence for genetic factors that could play a role in SUDP and noted that applying a multidisciplinary lens to the study of SUDP is not only possible but critical for advances in the field.

  • Former AMRC CEO Aisling Burnand Has Died from Bowel Cancer
    FasterCures is deeply saddened to hear of the death of Aisling Burnand, CBE, former Association of Medical Research Charities (AMRC) CEO, in September. She was chief executive of the AMRC from September 2014 until February 2021. At AMRC, Burnand brought the vital work of medical research charities to the forefront of policymakers’ agendas. She was awarded the CBE in the Queen’s Platinum Jubilee Honours in May 2022 for her work in creating a single voice for AMRC members during the COVID-19 pandemic. Throughout her life, Burnand was an advocate for patients and, in 2007, received an MBE for her services to science. Read more about Aisling Burnand and her contributions to health sciences.

  • Castleman Disease Collaborative Network Model for Advancing Patient-Centric Research
    In the article “The Collaborative Network Approach: A Model for Advancing Patient-Centric Research for Castleman Disease and Other Rare Diseases,” the Castleman Disease Collaborative Network outlines its collaborative network approach to utilize the entire community of stakeholders, including patients, physicians, and researchers, to identify significant research questions. Once research questions are identified, the organization recruits qualified researchers to conduct studies and empowers patients to be active participants in the fundraising and provision of biospecimen and/or clinical data. Through this model, CDCN democratizes research and allows the community to establish pressing research questions, rather than limiting that task to researchers. This model is generalizable and can be used by other rare disease organizations.

  • Milken Institute Review Features Solve ME’s Long Covid Costs White Paper
    The newest edition of the Milken Institute Review features an adapted version of Solve ME’s long COVID impact white paper. The adaption, “Paying a Second Time: The Economic Consequences of Long Covid in America,” explores the cost estimates of long COVID. The model suggests that, through January 2022, the pandemic has caused between 22 million and 43 million cases of long COVID in the US, and the health-care costs of those disabled by long COVID equal, on average, $18,000 per person annually.

News You Can Use

  • Helmsley Charitable Trust Request for Proposals
    The Leona M. and Harry B. Helmsley Charitable Trust has launched a Request for Proposals (RFP) to support the development of novel, real-world solutions aimed at helping people with Type 1 diabetes (T1D) exercise safely and improve their quality of life. The purpose is to utilize data to find real-world solutions. Researchers, clinicians, and statistical teams are to partner to analyze the data that were collected under Helmsley’s T1D Exercise Initiative (T1-DEXI), collaborate with third parties, and test the novel solutions in studies with people with T1D.

  • The Human Trial Documentary Release
    In November, The Human Trial, a documentary following the clinical trial journey behind breakthrough cures, was released. Directed by Lisa Hepner, the documentary follows the stories of patients with type 1 diabetes and researchers pursuing a stem cell treatment for T1D. Following the screening in Montreal, Canada, FasterCures Senior Director Kristin Schneeman participated as a speaker on the panel. The Human Trial is now streaming on Prime Video, AppleTV, and Google Play.

  • New CTTI Publication Investigates Best Practices for Driving Adoption of Master Protocols
    In a new publication, “Master Protocol Studies,” the Clinical Trials Transformation Initiative (CTTI) identifies best practices for driving the widespread adoption of master protocols. Through multistakeholder expert meetings, CTTI established a set of changes in the clinical trials ecosystem needed for mainstream adoption of master protocol studies. The publication also notes a set of tools CTTI developed to foster the design and conduct of high-quality, efficient master protocol studies.

  • Global Genes RARE in the Square Event
    Global Genes is hosting its RARE in the Square event January 8–11, 2023, in San Francisco’s Union Square. This event gathers rare disease innovators to network with industry thought leaders and encourage the establishment of patients as partners and drivers in rare disease drug development. The event is taking place concurrently with the JP Morgan Healthcare Conference and Biotech Showcase. All three will bring together more than 10,000 global biotech, pharma, health-care, and health-tech executives, investors, and others to create connections and partnerships.

  • EveryLife Foundation for Rare Diseases Hosts Rare Disease Week on Capitol Hill
    From February 28–March 2, 2023, the EveryLife Foundation for Rare Diseases will host its 12th annual Rare Disease Week on Capitol Hill. This event empowers and inspires hundreds of patient advocates, leading to key connections that benefit rare disease patients. Registration opens January 4, 2023.