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TRAIN Newsletter — September 2022

TRAIN Newsletter — September 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. To learn more about becoming a TRAIN organization, visit the TRAIN application page. 

In This Issue:

News From FasterCures

FasterCures Kicks Off ‘Advances in Science’ Webinar Series 
FasterCures’ new “Advances in Science” webinar series kicked off this summer, featuring esteemed scientists and medical thought-leaders for discussions centered around key issues, lessons learned, and opportunities to transform the health landscape. The first two webinars hosted Victoria A. Cargill, MD, assistant commissioner of health at the Baltimore City Health Department, and Judith Auerbach, PhD, professor of medicine at the University of California, San Francisco, for robust conversations on health inequities in public health service and enhancing community engagement in research. View webinar recordings and receive updates on upcoming webinars in the series. 

FasterCures Convenes Health Equity Forum in Memphis 
FasterCures recently hosted its first Health Equity Forum in collaboration with the National Civil Rights Museum in Memphis, Tennessee. The forum convened national and local leaders to educate, share solutions, and initiate new policies toward a more equitable future for health and biomedical research. FasterCures is preparing an issue brief and virtual workshop series focused on summarizing the forum’s key takeaways and action items to better integrate health equity across the health and biomedical research ecosystems. Read more about the Health Equity Forum and FasterCures’ commitment to advancing equity across health systems and research. 

New BMC Systematic Review on Drug Repurposing Features FasterCures’ Work  
As part of the Bridge Initiative, FasterCures Senior Director Sung Hee Choe was featured in a newly published systematic review on drug repurposing in the BMC Health Services Research journal. Talks of drug repurposing gained notable attention throughout the COVID-19 pandemic, following the Food and Drug Administration’s (FDA) decision to grant emergency use authorization to several repurposed drugs—including remdesivir—for the treatment of patients with COVID-19. The systematic review sought to identify characteristics, reasons, and examples of companies deprioritizing the development of promising drugs, as well as barriers, facilitators, and examples of successful drug repurposing.

TRAIN Patient Data Webinar Features IQVIA 
As part of an ongoing TRAIN webinar series, FasterCures and IQVIA led a discussion on July 21 aimed at exploring the power of patient registries to generate real-world insights. Participants heard leaders within the patient data and patient organization communities discuss modern operational challenges and opportunities for patient registries, and how to leverage the modern patient registry to generate real-world data and insights in support of patient advocacy efforts. View the recording and accompanying summary. 

TRAIN Publishes Foundation’s Role in Supporting Translational Science Toolkit 
In coordination with the National Center for Advancing Translational Sciences (NCATS), TRAIN convened a workshop to examine how patient-driven foundations actively support translational research from pre-clinical development to clinical implementation. Panel discussions focused on approaches to accelerate translational research, fielding the expertise needed to move ideas toward proof of concept and into the clinic, and how foundations can strategically engage throughout the process. View video recordings of the panel discussions and related resources as part of the TRAIN Toolkit library. 

Milken Institute to Host Future of Health Summit and Partnering for Patients Forum 
The Milken Institute will host the Future of Health Summit and Partnering for Patients Forum in Washington, DC, December 6-8, 2022. This in-person event will convene 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 will kick 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. An official invitation to register for the event will be sent in the coming weeks, but please save the dates above for now! 

TRAIN Organization Updates

ALS TDI Publishes Machine-Learning-Based Objective Measure in Collaboration with Google
The ALS Therapy Development Institute (ALS TDI) and collaborators at Google published a machine-learning-based objective measure for ALS disease severity. Utilizing Precision Medicine Program data and machine-learning to develop digital biomarkers of ALS, the tool will allow clinical investigators to measure ALS symptom severity and progression more accurately—particularly in relation to experimental treatments and interventions. Learn more about this innovative partnership between ALS TDI and Google. 

LLS Awards First Cohort of Recipients for Equity in Access Research Program 
The Leukemia and Lymphoma Society (LLS) recently awarded funding to the first cohort of its Equity in Access Research Program as part of an ongoing effort to understand the underlying causes of health disparities and inequities. The first cohort of award recipients will research how insurance type and status influence access to care for blood cancer patients and survivors to help identify recommendations for state and federal policy proposals that aim to reduce health disparities. 

Michael J. Fox Foundation Connects Parkinson’s Community through Buddy Network 
The Michael J. Fox Foundation launched the Parkinson’s Buddy Network to provide a safe space for members of the Parkinson’s disease community to share experiences, ask questions, and find support from their peers. The Parkinson’s Buddy Network enables users to locate others in their geographic area, interact through private and public discussion boards, access free resources, and join focus groups that are united under a similar identity or interest.  

Prostate Cancer Foundation and Pfizer Partner to Provide Global Health Equity Grant 
In collaboration with Pfizer Global Medical Grants, the Prostate Cancer Foundation (PCF) awarded $1.47 million to 11 teams across the world’s leading cancer research institutions in support of prostate cancer research. The grantees’ research projects aim to improve the understanding of, or reduce disparities in, the diagnosis, care delivery, and outcomes of prostate cancer patients from minority and/or underserved communities. Learn more about the PCF-Pfizer Health Equity Challenge Awards and grant recipients. 

Chordoma Foundation Executive Director Josh Sommer Shares Update 
The Chordoma Foundation’s executive director, Josh Sommer, shared a personal health update regarding his own battle with the disease: A recent MRI revealed a small, new tumor growth. As Josh prepares for surgery, he will share updates on his personal website for all who are interested in following along. Josh, we wish you well! 

News You Can Use

Funding Opportunity: PCORI Capacity Building Engagement Award 
The Patient-Centered Outcomes Research Institute (PCORI) is now accepting Letters of Intent (LOIs) for its Capacity Building Engagement Award, a research-support funding opportunity worth up to $250,000 across a two-year period. The funding opportunity is part of the Eugene Washington PCORI Engagement Award Program, which supports research initiatives that encourage the meaningful involvement of patients, caregivers, clinicians, and other stakeholders as critical members of the patient-centered outcomes research/clinical effectiveness research enterprise. 

Register: Global Genes Patient Advocacy Summit (September 12-14, 2022) 
Global Genes is set to host its annual Patient Advocacy Summit, September 12-14, 2022, in San Diego, California, bringing together the rare disease community to share insights on the latest rare disease innovations and best practices for advocacy. This three-day event will also be live streamed for those who are unable to attend in person.  

Register: NORD Rare Diseases and Orphan Breakthrough Summit (October 17-18, 2022) 
The National Organization for Rare Disorders (NORD) opened registration for its 2022 Rare Diseases and Orphan Breakthrough Summit, to be held in person in Washington, DC, October 17-18, 2022. The summit will feature discussions and poster presentations highlighting important topics in the rare disorder community, including accelerated approval, data sharing, and global access to therapies.  

FDA Hosts Public Meetings Focused on Patient Experience Data in Clinical Trials 
The FDA recently hosted a two-part public meeting focused on leveraging methods from the Patient-Focused Drug Development Guidance to enhance the inclusion of patient experience data in clinical trials. View the full list of the meeting agendas, slides, and recordings. 

Genetic Alliance Hosts Inaugural Research Symposium  
The Genetic Alliance recently hosted its inaugural Research Symposium, featuring presentations from disease advocacy and community groups. The presentations offered insight into the role of grassroots and grasstops communities as core instigators in research endeavors. View a recording of the Research Symposium.  

Global Forum Publishes Article on Patient Authorship in Peer-Reviewed Publications 
The Global Forum article highlighted the drivers, opportunities, and barriers for including patient authorship in research and company-sponsored studies, noting the value from both the patient and industry perspectives. The article detailed the importance of evidence-based training and resources to enable optimal co-authorship, as well as enhance the relevancy and accessibility of peer-reviewed medical literature. Read more about including patient authorship in research and company-sponsored studies.