New on TRAIN Central Station
News from FasterCures
The second Partnering for Cures event of 2017 is coming to the west coast. Join the brightest minds across all sectors of biomedical research on Nov. 13-14 at the convergence of patient-centricity and technology trends. Don't miss this opportunity to share ideas about how technological advances will shape and enhance the future of biomedical research. Attend sessions on how tech can teach medical research to be more collaborative, the social compact of health citizenship, and the potential impact of machine learning in R&D. Make the most of your experience with engaging roundtable discussions and partnering opportunities.
Join us for a course led by the Food and Drug Law Institute (FDLI) to learn the essentials of Food and Drug Administration (FDA) law and regulation and the role of patient organizations. This program brings together law, industry, and FDA experts with deep advocacy experience to equip patient organizations with an understanding of the legal tools and strategies available for interacting with the agency. Case studies will illustrate the opportunities for engagement and legal challenges facing patient organizations. FasterCures' acting executive director and managing director, Kim McCleary, will lead a session on opportunities to effectively engage with FDA.
FasterCures' Patients Count Network recently launched an Investigator Portal, which aims to connect researchers with patient groups. Researchers who submit their credentials are provided access to individual organization and aggregated survey responses. Organizations that have joined the Patients Count Network share data about their disease focus, collaborative initiatives, research assets, and more. Patients Count Network-affiliated organizations can view a list of approved investigators in the network.
FasterCures is developing a tool to help people understand what makes up their health data, how they are collected and shared, and who uses them. We recently surveyed more than 700 patients and caregivers and conducted 15 interviews with health data leaders. These efforts have highlighted gaps that need attention, including individuals not being able to track down who their health information has been shared with; individuals being unaware of protections and security surrounding their health data; and individuals not trusting stakeholders who are distant from the in-person, clinical encounter. This project is funded through a Eugene Washington Patient-Centered Outcomes Research Institute Engagement Award.
Patient foundations know how important collaborative R&D efforts are to get effective therapies to patients as quickly as possible. Foundations can use FasterCures' Consortia-pedia Catalogue to learn from organizations that lead or participate in research consortia, as well as find multiparty projects in their disease area. The catalogue has grown to include nearly 500 profiles of research consortia around the globe. These consortia span a broad range of disease types, and this expansion represents more rare diseases, including neurofibromatosis and schwannomatosis. Catalogue users can filter searches by disease type, consortium status, and type of research, enabling you to quickly and easily find collaborations of all kinds. The catalogue's newest features allow you to download individual consortium profiles as PDFs and export search results as Excel files, designed to help you sort and analyze data efficiently.
TRAIN Organization Updates
The Bonnie J. Addario Lung Cancer Foundation (ALCF) partnered with DrivenData to create a lung cancer early detection challenge for data scientists, software engineers, and researchers to build an open-source software application that puts advances achieved by machine learning into the hands of practicing clinicians. The goal of this challenge is to bridge the gap between research algorithms and clinical practice in early detection.
The Michael J. Fox Foundation for Parkinson’s Research released two Parkinson's datasets as part of an initiative to curate data for improved mining and analysis. Researchers can access clinical and biological data from more than 1,500 people with or without Parkinson's in the Parkinson's Progression Markers Initiative, and 220 moderate to advanced Parkinson's patients and control volunteers in the Fox Investigation for New Discovery of Biomarkers studies.
The Translational Genomics Research Institute (TGen) joins the Banner Alzheimer’s Foundation’s collaborative effort to develop a public resource of molecular data to help advance the scientific understanding, treatment, and prevention of Alzheimer’s disease. Banner Sun Health Research Institute, the Arizona State University-Banner Neurodegenerative Disease Research Center at the Biodesign Institute, and the Arizona Alzheimer’s Consortium are other collaborators on this project. It also includes researchers from the Icahn School of Medicine at Mount Sinai.
Two TRAIN participating organizations, the National Brain Tumor Society and the Crohn's & Colitis Foundation, have partnered with ClinicalTrialConnect to launch customized clinical trial matching platforms for their communities. Patients, caregivers, and families will be able to match to trials by zip code, age, gender, and keyword.
Friedreich’s Ataxia Research Alliance (FARA) released the “Voice of the Patient” report, a summary of testimony and survey responses from individuals living with Friedreich's Ataxia, based on an externally-led Patient-Focused Drug Development Meeting held this summer. This meeting mirrored the format and context of the FDA’s Patient-Focused Drug Development Initiative.
The Multiple Myeloma Research Foundation (MMRF) recently launched “The MMRF Answer Fund,” which aims to address important questions facing the multiple myeloma community and to advance precision medicine. MMRF is investing $5 million in the fund over the next three years. The Answer Fund will leverage the MMRF CoMMpass study, which tracks more than 1,100 myeloma patients over eight years.
News You Can Use
Clinical Leader reports that researchers at Tufts Center for the Study of Drug Development and the Drug Information Association developed a toolkit for measuring quantitative and qualitative impacts of patient-centricity initiatives on drug development. This toolkit is part of an ongoing research collaboration between the two organizations. While organizations across all sectors of the medical field desire to be more patient-centric, there is a need to quantify the benefits of patient engagement activities and measure the return on engagement.
Antidote, a clinical trial matching platform, raised $11 million in its latest funding round, led by Merck Global Health Innovation, according to PharmaForum. The platform takes on the challenges of clinical trial recruitment and participation by connecting patients with researchers. The platform is currently used in more than 180 online patient communities, including JDRF and the Cancer Moonshot.
STAT tells the story of researchers at Emory University who are searching for the genetic link to multiple cases of Alzheimer's disease in one Georgia family. Forty-four percent of this family's members who have one parent with Alzheimer's disease also get the disease. About 250 members of the extended Chastain family have donated blood samples and taken cognitive tests to help the researchers.