Join Medical Research Innovators at the Inaugural Partnering for Cures Meeting

"When it comes to medical research, never has it been more important to
think about the end game: getting therapies to people. To realize this, industry
and medical research foundations must work together early in the research and
development process, with philanthropy helping to pave the way."
- David Panzirer, Trustee, The Leona M. and Harry B. Helmsley Charitable Trust

FasterCures is committed to accelerating the process of turning exciting new medical discoveries into therapies that can treat patients. But, as you know, no one can do this work alone. Expediting cures requires collaboration. Join medical research innovators at the inaugural Partnering for Cures meeting. Uniting the passion of medical research foundations, the power of philanthropy, and the focus of biopharmaceutical companies, this meeting will catalyze a more effective and efficient medical research enterprise.
This first-of-its-kind meeting is designed to forge strategic cross-sector collaborations that will:

• empower philanthropists to measure the impact and return on their philanthropy;
• enable medical research foundations to find the right partners and investors needed to discover and commercialize new therapies; and
• facilitate biopharmaceutical industry partnerships that could yield cutting-edge medical solutions.

Register today and take part in this timely and crucial effort. Make one-on-one connections, share information, and meet potential collaborators through a customized partnering system designed to build relationships that could accelerate the pace of life-saving research and development. http://www.partneringforcures.org/
Space is limited, please register early. Significant discounts apply for early registration, special rates available for nonprofit medical research and patient advocacy groups.

Improving the Science of Drug Safety

By Margaret Anderson, COO, FasterCures and board member, Alliance for a Stronger FDA

How is FDA doing vis-à-vis the Science of Drug Safety? That was the topic of an Institute of Medicine (IOM) Drug Forum session held Wednesday to provide a review of activity since IOM, and the FDA Science Board released their reports, and the 2007 FDA Amendment Act. There is new leadership and energy at the agency around the drug safety question under Dr. Peggy Hamburg and her Deputy Dr. Josh Sharfstein and an evolving safety landscape.

For several hours, officials from the FDA, industry, and policy opinion leaders provided progress reports that showcased the work that’s underway at the FDA. Each had a resounding sentiment: much has been done, but more needs to be accomplished, and it won’t happen without substantial infusion of human and financial capital.

Indeed, much is on the FDA’s plate. Speakers echoed the importance of a life-cycle approach to evaluating drugs and medical devices – a way to monitor a product from its pre-approval through its post-marketing phases to ensure safety and efficacy. Such a holistic approach would require, among other thing,

• standardizing the collection and analysis of observational data,
• updating epidemiological approaches to go with evolving public health needs,
• ensuring interoperability and integration across federal agencies (i.e., efforts that relate to comparative effectiveness research and health information technology), and
• implementing communications channels to collect data from consumers in real-time (especially as it relates to adverse events), as well as relay back transparent, accurate, and reliable information

Several aspects of the risk management/drug safety question threaded through presentations. Such as: how much risk are we willing to accept in the area of drug safety? How does the advent of health IT and new batches of health data gathered per the Health Information Technology for Economic and Clinical Health (HITECH) Act impact what FDA needs to do to ensure drug safety? How can we tell if things are improving in terms of FDA’s ability to monitor drug safety?

The final message was from Dr. Gail Cassell, Co-chair of the Forum and Vice President, Scientific Affairs and Distinguished Lilly Research Scholar for Infectious Diseases, who ended with a reminder that FDA’s appropriated dollars are still not enough to tackle the drug safety to-do list. As an Alliance for a Stronger FDA board member I couldn’t agree more. We are conveying that message as loudly as we can, but need more voices.

This is an enormous undertaking. How do you eat an elephant? One bite at a time.

It's Time to Turn to Research's Most Valuable, Yet Underutilized Resource: Patients

By Margaret Anderson, COO, FasterCures
A piece in yesterday's New York Times, Research Trove: Patients' Online Data, recounts the story of a young woman stricken by a rare pulmonary disease, and her attempts to raise money and connect a network of scientists to research her ailment. In collaboration with a Harvard cancer researcher, she launched a Web site for others facing her same diagnosis, on which patients could share symptoms and report health information.

This kind of observational research, that focuses on empirical and experiential input, could prove invaluable in the quest to gain better understanding of disease and how it corrupts the functions of the human body. But there is more. Just as importantly, this story reinforces the contribution patients can make to their own medical care. In the search for cures, there is no substitute for patient engagement. For biomedical research to be effective and successful, it is imperative that it be patient driven. Empowering patients to play an active role in medical research requires transparent communication from trusted sources (i.e., frontline healthcare providers), a mechanism to ensure the patient's voice is heard loud and clear by decision and policy makers, the means for effective two-way communication between researchers and patients in real time, and informing the public about the value of clinical research to increase awareness and spur involvement.

FasterCures remains committed to supporting healthcare access but also in the creation of a “health cure” system that puts patients first.

FasterCures Statement on the Passing of Senator Kennedy

FasterCures joins the nation, and the world, in mourning the passing of Senator Ted Kennedy. He lived his life in service of the American people, fearlessly protecting and improving the way we live. His leadership in health, education, and labor has shaped our nation and his legacy will live on.

His relentless commitment to improving the well-being and health care for all Americans will continue to guide and inspire our work and that of the health advocacy community for generations to come. The roar of the Senate's lion will endure, his dream shall never die.

Our deepest condolonces go to his family, friends, and the nation.

PAS Offers Philanthropists Impartial Analysis of Select Medical Nonprofits

by Margaret Anderson, COO, FasterCures

The FasterCures Philanthropy Advisory Service (PAS) last week unveiled information on select Alzheimer’s disease and multiple sclerosis organizations, the first in a series of completed reports focused on efficacy and efficiency of research organizations. In its pilot phase, PAS features the latest medical research developments and objective analysis of key nonprofit disease research organizations in Alzheimer’s disease, malaria, multiple sclerosis, and tuberculosis.

PAS begins with the premise that when you invest your money, you look for the best return on investment. FasterCures created PAS to help philanthropists make informed investment decisions and have in place a mechanism to assess the return on their philanthropy.

Philanthropic investment in medical research, though small in size, plays a unique, critical role in finding medical solutions. I think of it as a small, but mighty piece of the pie. Philanthropic money fills funding gaps in research that is high-risk but also with potential of high-return. For some diseases, nonprofit funding models are virtually the only source of capital for innovative, risk-taking research. And yet, there is lack of independent, reliable data about disease research.

Launched as part of an effort to fill the information vacuum, PAS is a transparent and impartial resource for the medical research philanthropy community. PAS data and analysis are based on a focused set of criteria: how well – and how effectively – a nonprofit research organization is being run and how it is contributing to the advancement of research. Criteria include:

• Milestones
• Advisory boards
• Knowledge production
• Industry partnerships
• Tools and resources

The PAS pilot phase is available to all registered Premier Users. Those directly involved in medical research philanthropy are invited to become Premier Users and have free access for a full year to PAS resources.

Now available: An archive of the 8/13 web briefing featuring the following speakers and a live PAS demo:

• Lucy Bernholz, Founder & President, Blueprint Research and Design, Inc.; Member, PAS Organizational Review Board
  

  "Philanthropy Advisory Service is bringing about the careful, meticulous,
  well-informed research about diseases, disease research, disease research
  organizations, and bringing that to light in a way that can inform a wide
  variety and ultimately a large number of philanthropic assets so that the goal
  of advancing disease research can be achieved."

• John Q. Trojanowski, M.D., Ph.D., University of Pennsylvania, Co-Director, Center for Neurodegenerative Disease Research; Director, Institute on Aging; and Director, Alzheimer's Disease Core Center; Member, PAS Alzheimer’s Disease Scientific Advisory Board
  

  "I know of no other organization that brings this kind of expertise to bear on
  advising donors about how their investments in research are being used... The advisory service for Alzheimer’s, which is what I’ve specifically been involved with, has been detailed, accurate, substantive, clear, concise. I clearly see this as an important service that foundations can avail to determine whether they are hitting their target in their mission."

• Rusty Bromley, COO, Myelin Repair Foundation
  

  "We saw PAS as an opportunity [for nonprofit research organizaitons] to provide more transparency and help differentiate organizations within the same space based on their mission. Having an outside organization applying uniform criteria to measure operational effectiveness has tremendous value and something we can look at to determine how we're performing against our own internal standards."

• Tim Armour, President and CEO, Cure Alzheimer's Fund
  

  "PAS helps philanthropists and others to understand the niche that an
  organization serves, and then adds additional value of helping to evaluate how well the organization serves that niche... I think PAS does two things [for CAF]. One, we can learn about good practices from other organizations, in virtually real time - which is very valuable, particularly to a young organization like ours. Two, we can identify other organizations with whom we can partner with on specific issues. We can do that with a lot of other homework, person-to-person, but this gives us a very good first-cut."

Visit http://www.philanthropyadvisoryservice.org/ for more information.