The FasterCures Track: February 2014 - Rising tides advance common goals

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I applaud the Accelerating Medicines Partnership (AMP), a new initiative launched by the National Institutes of Health (NIH), 10 biopharmaceutical companies, and several disease-specific nonprofit organizations for finding ways to take what we know about disease and begin the process of turning this remarkable scientific knowledge into therapies that could improve patients’ lives. Focusing on three disease areas (Alzheimer’s disease, type 2 diabetes, and the autoimmune disorders of rheumatoid arthritis and lupus), this effort could pave the path for a new paradigm for drug development.

Collaborations like this hold tremendous promise. AMP is a shining example of how non-traditional partners with a shared goal can develop new ways to increase the productivity of our R&D enterprise in an environment of limited resources.

At FasterCures, we’ve recently initiated the Consortia-pedia project to better understand the breadth and scope of approaches that a wide range of research by consortium efforts have adopted. In 2012, we identified the launch of 51 new consortia – with most efforts centered on collaborative approaches that leverage expertise and resources of a wide range of partners to create tools and knowledge that advance the research objectives of all stakeholders. It's the rising tide that has the potential to advance the distinct goals of all researchers.

We look forward to the work that AMP will pursue and its potential to bring new medical solutions to patients.

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Margaret Anderson, Executive Director
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Event Highlights

View a complete listing of our upcoming speaking engagements

Register now for Webinar on FDA's new initiatives
FDA Webinar informationRegister today for a Webinar that will explore FDA's Patient-Focused Drug Development Initiative and the Benefit-Risk Assessment Framework on Wednesday, Feb. 19, 1 to 2 p.m. Eastern. The Webinar will feature Andrea Tan and Pujita Vaidya of the U.S. Food and Drug Administration (FDA) and Eric Gascho of the National Health Council, who will discuss the status of these efforts and their relevance for all stakeholders. This free Webinar is part of FasterCures' TRAIN (The Research Acceleration and Innovation Network) Webinar series designed to spotlight innovative approaches to disease research.

View archive and summary of Webinar on PCORnet
PCORI slideIn a recent Webinar, Joe V. Selby, executive director of the Patient-Centered Outcomes Research Institute (PCORI), and Susan Sheridan, PCORI's director of patient engagement, previewed for participants the vision for its ambitious new Patient-Centered Outcomes Research Network (PCORnet), funded in December with almost $100 million to 29 awardees, and its importance for post-market comparative effectiveness research and also for upstream therapy development. Also presenting was John Walsh, co-founder and president of the COPD Foundation, one of the Patient-Powered Research Network grant recipients.

See innovation in action
2013 InnovatorsAt the 2013 Partnering for Cures meeting, FasterCures was proud to feature 30 presentations by some of the most innovative cross-sector medical research collaborations in the field. Watch them describe their efforts to commercialize early-stage discoveries, share data, develop novel research tools, repurpose assets, and create innovative financial models to drive progress. For example:

  • Curious, Inc., a new platform for gathering, exploring, and sharing personal data, has partnered with two disease foundations to help their patient communities participate in a new research strategy that promotes data sharing and open access.
  • Through the Michael J. Fox Foundation's Parkinson’s Disease Data Challenge, researchers sought to develop the best way to benefit patients and clinicians through analysis of objective, passively collected data.
  • The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) platform, a joint project of Prize4Life and Neurological Clinical Research Institute at Massachusetts General Hospital, serves as a collaboration model among academia, pharma, and nonprofits by amassing more than 8,600 de-identified subject-records from 18 pharmaceutical and academic clinical trials into a single, harmonized data set.

 

In the News

Check out the latest mentions of FasterCures in the media

FasterCures resources help investors navigate brave new world of crowdfunding
Wall Street Journal logoAs conventional sources of life sciences research funding run dry, some new and well-established scientists are turning to crowdfunding to continue their research. While the model offers everyday citizens an opportunity to participate in cutting-edge research, people without a strong understanding of science may be overwhelmed as they try to pick promising projects, says FasterCures' Margaret Anderson in a Wall Street Journal article. FasterCures created a set of questions to ask before donating or investing in research projects that can be used by disease foundations as well as laypeople considering crowdfunded projects, Anderson said.

GettingStarted and GivingSmarter report coversRelated resource:

  • View resources in our Philanthropy Tool Kit, which aim to help philanthropists make better decisions and make an impact.

Anderson cites collaborative efforts as ‘way of the future’
nature logoIn a Nature article about the NIH’s new Accelerating Medicines Partnership, Margaret Anderson calls industry-government partnerships the “way of the future.” Read FasterCures’ full statement about this collaboration.

TRAIN groups help scientists bridge 'valley of death'
smTRAINlogoThe biotechnology fundraising landscape has changed dramatically over the past decade, and entrepreneurs must be nimble, informed, and flexible, according to an article in the journal Nature. The authors lay out a framework for developing a systematic approach for identifying and prioritizing potential investors, including newly emerging sources of capital such as venture philanthropy. The article cites The Research Acceleration and Innovation Network (TRAIN) as providing a wide range of resources that can be helpful to scientists looking for help with a new venture.

 

Blog Briefs

Read our latest blogs on innovations in the medical research ecosystem on tumblr

How long can innovation be stalled?
innovation blog quoteBiomedical innovation has found a home in academic institutions for centuries, writes Kathi E. Hanna, FasterCures senior fellow, in a recent blog post. Recently, however, academic research institutions, especially those that also provide patient care, are feeling squeezed from all sides. We interviewed a dozen leaders in academic medical research to get a read on how institutions are meeting the simultaneous challenges.

FY 2014 Federal Budget – A hopeful sign for the future of medical research
federal budget imageLast month, after being passed by wide margins in both the House and Senate, President Obama signed the $1.1 trillion spending package that will fund the U.S. federal government until September 2014. After letting the dust settle, it seemed appropriate to give a summary on what this budget means for the near-term future of medical research. While this budget does not repair all of the damage caused by the recent sequester, we hope that there are better days ahead.

Related resource:

  • R and D policyView more information about R&D policy, including the Federation of American Societies for Experimental Biology’s analysis of how budget cuts reduced 2013 biomedical research, on FasterCures’ R&D Policy page.

Value and Coverage: How reimbursement decisions impact innovations needed to improve health
Value and Coverage report coverWhen it comes to the issue of value and coverage for medical innovations, the medical research community is in search of a better understanding of the evidentiary standards that payers consider when reimbursing treatment and care. In a recent report, FasterCures presents a number of recommendations for patient organizations and for other stakeholders engaging with patient organizations to consider. Recommendations fall under three major categories:

  • Collaborate. Engage with CMS and other payers regularly to increase their understanding of your condition - from the nature of the disease, the impact of existing therapies on quality of life, and even coverage and pricing issues your constituents face. Regular engagement helps inform the decision process and prevent decisions made in a vacuum.
  • Leverage data. Anecdotes are important, but data matter most. Articulate in clear and concise terms what patients consider meaningful to enhance the assessment of clinical benefit.
  • Deploy better, smarter care. To ensure coverage for life-saving innovations, you must be vigilant about removing waste from the system and not allowing new forms of waste into it, including misuse of products and services. Challenge behavior that contributes to wasteful spending and lack of accountability.