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
TRAIN Organization Updates
News You Can Use 

News from FasterCures

New Publication: Toward a National Action Plan for Achieving Diversity in Clinical Trials
FasterCures partnered with the Clinical Trials Transformation Initiative (CTTI) and the Multi- Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard to host a series of convenings to investigate efforts to improve diverse clinical trials and inform the publication of a National Action Plan for increasing diversity in clinical trials. This report details the actions organizations and sectors can take to create a clinical trials enterprise that is diverse, equitable, inclusive, and accessible to all.

Highlights from Global Conference
In May, the Milken Institute hosted leaders across sectors at the 27th Global Conference in Los Angeles, focused on "Shaping a Shared Future." Visit the links below for detailed descriptions and recordings of the sessions FasterCures curated:

• Health Economics Driving New Investments

• Revolutionizing Research: Democratizing Clinical Trials

• The Cancer Diagnostics Revolution

• What’s Trending in MedTech.

• Placing New Bets in Biomedical Innovation: Where Is the Next Cure

For more health updates from Global Conference, read Key Trends in Health from Global Conference.

Join TRAIN Communities of Practice
Join The Research Acceleration and Innovation Network (TRAIN) Communities of Practice (CoP) today. CoP is a dedicated forum for discussing challenges and sharing promising practices, strategies, and ideas. CoP focus areas include expertise, patient care, funding, and relationship- building to advance research and development. To participate, please complete the Communities of Practice Intake Form by August 16.

Upcoming Health Outcomes Webinar
This August, FasterCures’ TRAIN will host a webinar focused on health outcomes. In this virtual discussion, we will hear from foundation leaders who have developed patient-centered outcome measures. More details and registration information will be sent via email to the TRAIN community soon.

TRAIN Organizations Updates

Congress Passed Bill for National Plan to End Parkinson’s
The US Senate has unanimously passed the National Plan to End Parkinson's Act, the first federal legislation to combat Parkinson's disease. The Michael J. Fox Foundation engaged the Parkinson's community to advocate for this bill by collecting names for a petition, encouraging individuals to contact their senators and representatives, urging the sharing of personal stories on social media, and organizing nearly 1,000 advocates to meet directly with their members of Congress.

Friends of Cancer Research Publishes Report on Underrepresented Populations in Clinical Trials
A new Friends of Cancer Research report, published in Clinical Cancer Research, evaluated postmarketing requirements and commitments over the past decade, focusing on data representation of racial and ethnic populations in oncology clinical trials. Its research underscores the importance of collecting data from diverse populations and offers insights into the Food and Drug Administration’s expectations of race and ethnicity in clinical trials.

Alzheimer’s Association Report Provides Guidance for Addressing Dementia in the Workplace
A new white paper by the Alzheimer’s Association addresses the growing issue of cognitive impairment and dementia in the workplace. The report provides several recommendations for creating a dementia-friendly workplace and advocates for awareness and compassionate policies to support affected employees and foster a supportive work environment.

iConquerMS Wins Award for Excellence in Patient Engagement
iConquerMS was awarded the Jury Special Award at the 2024 Patient Engagement Open Forum for its Research Inclusion, Diversity, and Equity (RIDE) Council. The RIDE Council is made up of people living with multiple sclerosis (MS) with the goal of improving research participation in traditionally underserved groups. Congratulations iConquerMS!

News You Can Use

Apply for FDA’s Rare Disease Endpoint Advancement Pilot Program
The FDA's Rare Disease Endpoint Advancement (RDEA) Pilot Program aids in developing novel efficacy endpoints for drugs treating rare diseases. RDEA is now accepting proposals on a rolling basis for the last two quarters of the year. Sponsors whose proposals are accepted will have the opportunity to meet with FDA experts on endpoint development.

Apply for the FDA/CTTI Patient Engagement Collaborative
In collaboration with CTTI, the FDA seeks patient advocates to apply for the Patient Engagement Collaborative. This forum allows the patient community and FDA staff to discuss topics that enhance patient engagement in medical product development and regulatory discussions. Applications are accepted online until August 8.

NIH ENGAGE Working Group Seeks Public Input
The National Institutes of Health (NIH) launched the ENGAGE Working Group to develop novel engagement strategies to increase public voice throughout all stages of clinical research. This working group is made up of patients, advocates, researchers, clinicians, nonprofit representatives, and more. ENGAGE is seeking input about strategies for maximizing public engagement throughout clinical research. Submit your comments by August 14.

FDA Launches a Rare Disease Innovation Hub
The FDA officially announced the creation of its Rare Disease Innovation Hub on July 17. The hub will be modeled after its Oncology Center of Excellence and foster more collaboration and coordination on rare disease activities between the Center for Drug Evaluation and Research and the Center for Biologics Evaluation and Research. The hub will serve as a single point of connection for the rare disease community and will also have dedicated workstreams to advance regulatory science related to novel endpoint development, biomarkers, innovative clinical trial designs, and more.

Avalere Report Highlights the RNA-Based Therapeutic Landscape
A recent white paper by Avalere highlights the expanding landscape of RNA-based therapies. RNA-based therapies are a growing field in therapeutic development, offering potential treatments for various conditions, including rare diseases. The report also examines how regulatory classifications for RNA-based therapies impact their development, commercialization, and patient access.

NCATS Report Provides Recommendations for Building Decentralized Clinical Trials
Decentralized clinical trials (DCTs) leverage technology and community partners to reach participants beyond traditional medical research centers, making trials more efficient, effective, and equitable. A new report from the NIH’s National Center for Advancing Translational Sciences (NCATS) provides recommendations to strengthen and expand DCTs.