New on TRAIN Central Station
News from FasterCures
Do your patients know where their health data live? Our work with TRAIN organizations has helped us recognize that most patients haven't been informed about the complex data infrastructure that supports their health care. With support from the Eugene Washington PCORI Engagement Award program, FasterCures has launched a survey to understand patients' experiences and understanding of health data. The information from the survey will be used to shape an educational tool for patients. We would appreciate you sharing the survey with patients and caregivers to help increase our level of understanding. You can take or share the survey here and find out more about the project on its site.
For years, traditional definitions of value have left out the patient. FasterCures, Avalere Health and a multi-stakeholder Steering Committee committed to change that. Recently, we released Version 1.0 of the Avalere-FasterCures Patient Perspective Value Framework, a detailed value framework and methodology designed to assess the patient perspective on value and change the value conversation in health care.
Don't miss our most recent addition to the Patients Count Case Files, featuring Parent Project Muscular Dystrophy (PPMD), an organization that is leading the way to end Duchenne muscular dystrophy. PPMD developed a tool that has helped them more effectively communicate and engage with potential partners. Senior Vice President Annie Kennedy shares why the tool has been so beneficial for their organization on our blog.
TRAIN Organization Updates
The Epilepsy Genetics Initiative (EGI), a signature program of Citizens United for Research in Epilepsy (CURE), has launched a pilot program with the LGS Foundation. The EGI initiative works to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy. The partnership will help more individuals affected by Lennox-Gastaut Syndrome (LGS) receive genetic testing to help find causes to this severe form of epilepsy.
The National Brain Tumor Society launched a clinical trial finder, trials.braintumor.org, in an effort to reduce barriers to clinical trial participation. The new tool will make it easier for brain tumor patients to find up-to-date information on clinical trials and enable them to make more informed decisions about their treatment options. The trial finder was designed specifically for brain tumor patients by a volunteer web developer who has successfully battled a brain tumor.
A new interactive comparison tool for 18 pre-clinical models of Parkinson's disease (PD) is now available. By organizing information related to the characterization of selected PD models, this resource conveys what is known about each one and facilitates comparison of phenotypes.
The new clinical trial, INSIGhT, is designed to more rapidly evaluate experimental drugs and genomic biomarkers for treating brain tumors. The study is simultaneously testing three different investigational drugs for glioblastoma, the deadliest form of brain cancer. The study is flexible and, as the trial progresses, more patients will be assigned to the arm or arms of the trial in which patients are showing better results.
Multiple Myeloma Research Foundation (MMRF) Founder Kathy Giusti was one of 34 leaders, selected by Fortune, who are driving progress in medicine and "the business of keeping us healthy." Giusti was recognized for her leadership and having "created what is without question the most successful patient advocacy model on the planet."
News You Can Use
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The National Institutes of Health (NIH) and the Food and Drug Administration (FDA) have created a template to help facilitate the FDA review process for NIH-funded clinical trial protocols. The 60-page harmonized template for clinical trial protocols aims to save time and money for sponsors of mid-stage and late-stage studies. The NIH-FDA template was developed with input from a wide range of stakeholders and aligns with a template for industry-sponsored trials produced by TransCelerate BioPharma.
Vol-PACT Phase II is a three-year research partnership designed to develop new methods for analyzing digital images to more accurately measure cancer response and progression. Vol-PACT is the first of its kind to procure imaging data from multiple completed, pharmaceutical industry-sponsored, phase II/III clinical trials to identify novel drug response metrics. The project is expected to review data from 12 different phase II/III trials from multiple cancer types and therapies.