Dear TRAIN Friends and Colleagues,
FasterCures is excited to announce that we are relaunching TRAIN eNews! TRAIN eNews will provide the latest updates on FasterCures’ activities; recent activities from The Research Acceleration and Innovation Network (TRAIN) organizations; and information about news, events, and resources that may be of interest to TRAIN organizations given their unique role as patient-centered foundations that advance medical research. We encourage you to share new activities, achievements, and resources from your organization (or other relevant organizations) that you would like to see featured in future newsletters by sending an email to [email protected] (please note: shared resources should have a hyperlink as we are not able to send attachments with our newsletters). We hope that you will find these newsletters useful. Thank you so much for your participation in TRAIN and all you do to serve the patient community!
Warmest Regards,
Esther Krofah
Executive Director, FasterCures and Center for Public Health
In This Issue:
TRAIN eNews is delivered directly to organizations that take part in TRAIN. To learn more about becoming a TRAIN organization, visit the TRAIN Application page.
Recording and Slides Available for TRAIN Webinar on Collecting and Sharing Patient Data
The Crohn’s & Colitis Foundation, T1D Exchange, and Genetic Alliance presented models they have employed to collect and share patient data for research purposes, as well as how they have addressed issues of data platform guiding principles, governance, and sustainability.
New Report on Building Trust for Sharing Patient Data to Accelerate Medical Research
This report summarizes FasterCures’ interview series on data-driven patient participation in research and a private roundtable focused on building trust to achieve a shared vision for patient data. It describes key themes that have emerged from these efforts and briefly mentions upcoming work that will build on this foundation.
Recent Webinar and Report on the Lessons Learned from the COVID-19 Response
In March, top health leaders including Francis Collins (director of the National Institutes of Health) and Janet Woodcock (acting commissioner of the Food and Drug Administration) discussed lessons learned from the COVID-19 response and some of the “silver linings” that should be maintained to combat other emerging infectious disease outbreaks and speed biomedical innovation in the future.
Future of Health Summit to Be Held Virtually June 22-23, 2021
The 2021 Milken Institute Future of Health Summit will take place virtually June 22-23, convening the world's leading minds to confront and work towards solving the most significant health challenges. All TRAIN members should have received a separate invitation to the event. All sessions will be publicly live-streamed on the event website.
The IBD Ventures Program Offers Funding for New IBD Products
The Crohn’s & Colitis Foundation is seeking to accelerate the development of new products to treat inflammatory bowel diseases through IBD Ventures, which is currently accepting applications to fund private-company and academic product-oriented research.
The Leukemia & Lymphoma Society Announces New Venture Philanthropy Investments
Through its Therapy Acceleration Program, the Leukemia & Lymphoma Society is making strategic venture philanthropy investments in five companies to help advance treatments and therapies for leukemia and other types of cancers.
LRA-Funded Study Discovers a Therapeutic Target for Blocking Lupus Inflammation
The Lupus Research Alliance (LRA) supported research that identified a way to block lupus-related inflammation caused by the IRE1α protein. This research could contribute toward developing a treatment that targets this inflammation to lessen or eliminate lupus’ damaging effects.
The Chordoma Foundation Supports the First Pre-clinical Study for Brachyury Treatment
The Chordoma Foundation is funding the first-ever preclinical efficacy studies of two or three potential drug candidates to treat brachyury, which is the likely driver behind chordoma disease.
FDA Issues Its First Letter of Noncompliance for Failure to Post Clinical Trial Results
On April 28, 2021, the FDA issued its first-ever notice of noncompliance to a company for its failure to report clinical trial findings. This action is an important step toward promoting transparency of clinical research findings and results going forward.
New 21st Century Cures Act Final Rule to Provide Greater EHR Access to Patients
The Office of the National Coordinator for Health Information Technology Cures Act Final Rule that went into effect in April 2021 will give patients greater access to their electronic medical records and provide additional opportunities for app developers to create products that allow patients to access their health data.
NHC Releases New Resources for Agreements between Patient Organizations and Pharma
The National Health Council (NHC) recently released Patient Contracting Tools, which include a template agreement and companion contracting documents between patients/patient groups and pharmaceutical companies for patient engagement activities.