TRAIN Central Station is the online platform for venture philanthropy in medical research, where foundations that fund research share best practices, exchange ideas, and find relevant tools and resources
Patient registries can be powerful sources of patient perspective data, a new report from FasterCures illustrates. Decision-makers in research, industry, policy and health-care settings are increasingly seeking robust sources of patient data to inform patient-centered practices, policies and outputs. This report is aimed at establishing reliable methods and practices for understanding and incorporating patient needs into the process of developing, regulating and delivering new therapies.
FasterCures embarked on an effort to craft template grant agreement language after it was suggested at the September 2014 TRAIN workshop on University-Foundation Partnerships. To ensure that others can weigh in, provide input and learn from this conversation, we recently released the model provisions.
Patient engagement will continue to drive both medical research and policies this year, writes FasterCures Executive Director Margaret Anderson in the Huffington Post. Among the other issues to watch this year: the drug-pricing debate, the Precision Medicine Initiative, changes in how academic research is conducted and using real-world evidence in clinical trials.