New on TRAIN Central Station
Throughout FasterCures’ engagement with TRAIN organizations, we have heard that stakeholders are increasingly asking foundations to be the “honest brokers” of collaborative research. Building and sustaining these collaborations requires balancing competing interests and calls for different skills than the individual grant-making process that foundations are used to. To address this emerging trend, FasterCures compiled a variety of templates, publications, and other resources from across sectors to guide these efforts. Our latest report and toolkit are complementary resources that offer insights on how to streamline the planning and execution of collaborative initiatives by foundations. The toolkit will be a living resource that we will add to as we hear from TRAIN organizations. Use these resources to facilitate collaborative processes, from governance structures to sharing data.
News from FasterCures
More than six months have gone by since the passage of the 21st Century Cures Act. Because this landmark legislation touches nearly all aspects of biomedical research, from medical product development through regulatory approval, we debuted the 21st Century Cures Tracker to monitor the implementation of the key provisions relevant to biomedical research and innovation. The tracker allows you to filter by status and various tags, letting you focus on the topics that matter most to you. On our blog we examine implementation activity to date.
Patients have been the greatest force driving change across the R&D spectrum in the last five years; incentives created through federal policy measures have accelerated adoption and shifted culture toward more patient-centered decision-making. In a new publication, FasterCures looks at the early benefits gained as patient-centric practices take hold. Read the full piece to learn more about the “gold rush” of endeavors to construct a science of patient input.
The recent Partnering for Cures Boston featured several TRAIN members, including Laura Sol of the American Heart Association on patient-centricity, Louise Perkins of the Melanoma Research Association on young investigators, Steve Perrin of the ALS Therapy Development Institute on cross-sector partnerships, Sohini Chowdhury of the Michael J. Fox Foundation for Parkinson’s Research (MJFF) on clinical research, and Cynthia Rice of JDRF on the federal policy landscape.
Luke Timmerman, founder of the Timmerman Report, moderated a FasterCures webinar last month, reviewing some of the “megatrends” increasing the imperative for stakeholders to collaborate. Todd Sherer of MJFF, Jodi Black of the National Institutes of Health (NIH), and Stephen Yates of UCB Biosciences discussed how as collaborative efforts continue to proliferate, there needs to be more examples and resources from which to build. Watch the webinar on our web site.
TRAIN Organization Updates
The U.S. Food & Drug Administration unanimously recommended approval of a new treatment for patients with relapsed/refractory acute lymphoblastic leukemia called CAR-T (chimeric antigen receptor T-cell) immunotherapy. The Leukemia & Lymphoma Society (LLS) was an early investor in CAR-T therapy.
The T1D Fund is a new venture investment fund that is capitalized by JDRF. This fund is an example of the venture philanthropy funding model that is changing conventional venture capital.
The DREAM Challenge is the first in a series of crowd-sourcing projects from Sage Bionetworks with funding from the Robert Wood Johnson Foundation and MJFF. The challenge will aim to use sensors on mobile devices to identify aspects of Parkinson’s disease severity based on measurements of movement.
The Focused Ultrasound Foundation (FUSF) and the Cancer Research Institute (CRI) are establishing a partnership with the goal of advancing the development of new focused ultrasound and cancer immunotherapy treatments. As part of this partnership, CRI and FUSF will establish a joint fund to support research to move toward new combination therapies.
CD Access provides Duchenne muscular dystrophy patients in Canada access to drugs and therapies that are currently unavailable through clinical trial or prescription. Debra Miller, founder and CEO of Cure Duchenne and the newly created CD Access, said, “We believe it is important for Duchenne patients who participated in the clinical trial to have access to investigational drugs when and where there are no approved options for treatments for this rare disease.”
CureSearch for Children’s Cancer accelerates the search for cures for children’s cancer by driving innovation, transcending research barriers, and solving the field’s most challenging problems. Emily’s Entourage raises money and awareness to help find a cure for cystic fibrosis, with a focus on rare mutations. Interested in becoming a participating member of TRAIN? Learn more and apply.
News You Can Use
The Cleveland Clinic has released its second annual analysis of the federal web site ClinicalTrials.gov on the number of agents entering the Alzheimer’s disease (AD) pipeline. The report indicates immediate challenges facing AD drug development including clinical trial recruitment and funding.
The Rally for Medical Research calls on policymakers to make funding for the NIH a priority. This event seeks to raise awareness about the importance of investing in medical research that leads to finding cures faster.