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report
Fostering Collaborative Research For Rare Genetic Disease: The Example of Niemann-Pick Type C Disease
Rare disease represents one of the most significant issues facing the medical community and health
care providers worldwide, yet the majority of these disorders never emerge from their obscurity, drawing little attention from the medical community or th
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report
IBD Plexus: Partnering to Accelerate Science
IBD Plexus is a research and information exchange platform whose goal is to accelerate research and
transform the care of patients with inflammatory bowel disease (IBD).
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report
Neurofibromatosis Preclinical Initiatives (NFPI)
The NF Preclinical Initiative (NFPI) represents one of the Children’s Tumor Foundation’s groundbrea
king models of scientific collaboration.
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report
University-Foundation Relations: From Transactional to Transformative Partnerships
In biomedical research, both nonprofit disease foundations and academic research institutions are c
ommitted to translating research into effective therapies for patients.
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report
Venture Philanthropy Legal Report: The Importance of An Interruption License
This report is one in a series on legal issues of interest to non-profit organizations engaged in o
r thinking about Venture Philanthropy work. It discusses the beginnings of Venture Philanthropy in drug development, the importance of an Interruptio
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report
ESG Investing: Beyond the Standards
In the face of increased pressure from investors for information and the complexity of disclosing t
he relevant data, the public and private sectors agree on the need to simplify environmental, social and governance (ESG) reporting.
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video
Venture Philanthropy in Action: A Case Study of EB Research Partnership and ProQR
How are nonprofit organizations leveraging venture philanthropy to accelerate the development of t
reatments and cures?
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video
Technology Enabling Decentralized Trials, Novel Endpoints, Real World Data
New technologies and approaches to collection and use of patient data have the potential to revolu
tionize clinical research. How can patient organizations support this movement? What are potential pitfalls to watch out for?
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video
Master Protocols, Adaptive Designs, and Bayesian Statistics – Oh My
Master Protocols, Adaptive Designs, and Bayesian Statistics: These innovative trial approaches are
sometimes described as being “patient-centric.” Are they? What are the challenges and opportunities for patient groups to support them?
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video
Opportunities for Patient Group Engagement in Clinical Trials
What is the range of opportunities for patient foundations to support more rapid and effective cli
nical research, through preference studies and other patient insights, trial design and networks, recruitment and retention?
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video
The Drive for More Diverse and Representative Clinical Trials
How can foundations help to drive diverse and representative clinical trials in the face of long s
tanding racial and ethnic disparities in healthcare and research?
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article
TRAIN Newsletter — July 2024
TRAIN eNews is delivered directly to organizations that take part in The Research Acceleration and I
nnovation Network (TRAIN).
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