December 17, 2013

NIAMS is committed to working with the Coalition to share the latest research advances and related developments, and to foster dialogue on the future path and directions of NIAMS-funded research. The NIAMS Coalition Outreach and Education meetings provide the Coalition members with an opportunity to share best practices on the importance of connecting science to the public, while gaining a better understanding of how the National Institutes of Health (NIH) and NIAMS function.

Group photo: Attendees at the NIAMS Coalition 2013 Outreach and Education Day
Attendees at the NIAMS Coalition 2013 Outreach and Education Day

Executive Summary

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) biennial Coalition Outreach and Education Meeting: Creating Connections for Science, was held on November 6, 2013, at the Fisher’s Lane Conference Facility in Rockville, MD. The NIAMS Coalition is an autonomous group of nearly 90 professional and voluntary organizations interested in programs that are under the purview of the NIAMS. More than 40 representatives of different Coalition organizations attended the meeting. Attendees were able to expand their knowledge of the programs and opportunities available at the National Institutes of Health (NIH) and the NIAMS, interact with staff, and share ideas about how to best collaborate with the Institute and each other.

NIH Director Francis S. Collins, M.D., Ph.D., welcomed participants and called the event “a celebration of accomplishments in science, education and outreach.” Dr. Collins expressed that while it’s an exciting time to be involved in science, it has also been a challenging time. He gave attendees an overview of recent events and expressed concern over the current economic situation. Dr. Collins urged attendees to spread the word about how the NIH helps to grow the economy, in part, by reducing the burden of chronic disease. He encouraged them to increase the visibility and importance of biomedical research in general, not just for the diseases for which they advocate. “I hope today you can learn more and create some inspirational ideas. Thank you for the work you do,” he concluded.

Anita M. Linde, M.P.P., Director, Office of Science Policy, Planning and Communications (OSPPC), NIAMS, joined outgoing Coalition Co-chair Kim Cantor of the Lupus Foundation of America, in welcoming attendees. Ms. Cantor gave a recap of the past two years of Coalition activities and thanked the NIAMS for organizing the meeting. The Coalition “leads efforts at the Federal level to promote and educate stakeholders on the importance of the research supported by the NIAMS,” said Cantor. “Learning about the activities of the Institute through meetings and events like this one makes us better at what we do,” she added. Cantor encouraged attendees to become more involved in the Coalition by participating in teleconferences, taking on a leadership role as part of the Coalition Steering Committee, sharing ideas and helping the group to progress.

NIAMS Director Stephen I. Katz, M.D., Ph.D., presented Cantor with a certificate to recognize her dedicated service and outstanding leadership as Coalition Co-chair for the past two years. Leah Howard of the National Psoriasis Foundation will replace Cantor as the incoming Co-chair, joining current Co-chair Sarah D’Orsie of the American Academy of Physical Medicine and Rehabilitation.

State of the Institute

Dr. Katz provided research highlights and briefly discussed the impact of the 2013 government shutdown. He noted that the shutdown was a significant challenge for many Americans, including the more than 75 percent of NIH staff who were placed on furlough. There was one bright spot for NIH, however. In almost every mention – from scientific journals, to news outlets, and even on the floor of Congress – the importance of the work NIH does was emphasized. “It was a very difficult time, but it was heartening for us to hear how much NIH’s work is valued by every community throughout this nation,” Dr. Katz stated.

Dr. Katz also highlighted some recent NIAMS-supported advancements, such as the development of two new drugs—tofacitinib and anakinra—for the treatment of rheumatoid arthritis and neonatal-onset multisystem inflammatory disease, respectively. Much of the groundwork that resulted in Food and Drug Administration approval of these drugs was conducted as basic and clinical research at the NIH. The Institute is also continuing its involvement with the NIH Common Fund’s Patient Reported Outcomes Measurement Information System, which the NIAMS has led for 10 years. Dr. Katz discussed some examples of collaborations with Coalition organizations. He also encouraged participants to stay involved not only with the NIAMS, but also with other NIH Institutes and Centers, and federal working groups whose research areas overlap with those of the NIAMS.

NIAMS Long-Range Plan

David Zielinski, Ph.D., Chief, Science Policy and Planning Branch, OSPPC, NIAMS, discussed efforts to update the NIAMS Long-Range Plan. He alerted participants to a current Request for Information (RFI) asking researchers, health care professionals, patient advocates and health advocacy organizations, scientific and professional organizations, federal agencies, and other interested members of the public to provide input on the Plan.

The NIAMS is updating the Plan to help guide the research it supports over the next five years. Public input on the topics to be included in the plan and suggestions regarding how to enhance the NIAMS research portfolio are critical initial steps in this effort. Dr. Zielinski gave details on the timeline and process for the update. He also showed attendees how to complete the RFI form available on the NIAMS website and encouraged them to express their views on:

  • Research needs and opportunities that should be modified because of progress over the past five years, and
  • Emerging research needs and opportunities that should be added to the plan.

The Importance of Advancing Translational Science

David Eckstein, Ph.D., Senior Health Scientist Administrator, National Center for Advancing Translational Sciences (NCATS), NIH, spoke about the progress the NCATS has made since its inception in 2011. Its mission is to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster. This is being accomplished, in part, by catalyzing collaborations with organizations outside the NIH.

Dr. Eckstein talked about some current collaborations including the NCATS-led Clinical and Translational Science Awards (CTSA) program. The program supports research teams that endeavor to tackle common problems that no one organization can handle alone. The projects under the CTSA program cover the entire spectrum of translational research from bench to bedside. “CTSA research is all about collaboration, hopefully leading to faster, cheaper and more effective therapeutic approaches to disease,” he said. Dr. Eckstein also provided examples of programs at the NCATS that involve partnerships with organizations like those that comprise the Coalition. For example, the Therapeutics for Rare and Neglected Diseases Program aims to develop new collaborative models of rare disease research by facilitating interactions among government, industry, academia and patient constituency groups. These public-private partnerships can result in new discoveries that help to overcome bottlenecks in the treatment development pipeline. Currently, there are approximately 6,000 rare diseases that affect about 25 million Americans. Yet, there are fewer than 250 treatments available. The NCATS has supported 15 projects under this program to date.

The Foundation for the National Institutes of Health (FNIH): A Catalyst for Public-Private Partnerships

Maria C. Freire, Ph.D., President, FNIH, explained that the purpose of the Foundation is to support the NIH mission by advancing collaborations with biomedical researchers from universities, industry and nonprofit organizations.

Dr. Freire also talked about some of the accomplishments of the FNIH, and how it can mobilize resources and work with the NIH and outside funders to move research projects forward. The Foundation has raised over $700 million since 1996, and most of the funds are allocated for research partnerships. Currently, the FNIH has 103 active projects ranging from the discovery phase to clinical application.

Dr. Freire described the Biomarkers Consortium, which is one of the public-private initiatives managed by the Foundation that involves the NIAMS. The Consortium endeavors to discover, develop, and qualify biological markers (biomarkers) to support new drug development, preventive medicine, and medical diagnostics. It is helping to create a new era of personalized medicine, with more highly predictive markers that have an impact during a patient’s illness or lifespan. “We need to determine when a disease starts, and its progression,” Dr. Freire said. The goal is to combine the forces of the public and private sectors to accelerate the development of biomarker-based technologies, medicines, and therapies for the prevention, early detection, diagnosis, and treatment of disease.

Sharing Best Practices

During the working lunch, Annie Kennedy of the Muscular Dystrophy Association facilitated an informal discussion among Coalition attendees centered on sharing best practices and ideas on how to work together to advance the NIAMS mission. Ms. Kennedy is a former Co-chair of the NIAMS Coalition and a current Steering Committee member.

The following afternoon concurrent breakout sessions were offered.

Breakout session 1, titled "Collaborations to Foster Innovative Research and Training in Skin and Rheumatic Diseases," was led by Robert H. Carter, M.D., Deputy Director, NIAMS, and Carl Baker, M.D., Ph.D., Director of the Keratinocyte Biology and Diseases Program, Division of Skin and Rheumatic Diseases, NIAMS. They divided the session attendees into two smaller groups—one focused on rheumatic diseases and one focused on skin diseases. Dr. Carter’s group discussed the need for organizations interested in advancing research in rheumatic diseases to collaborate. He mentioned that patient advocacy groups in particular can help to advance rheumatic research because they have access to patients. The participants shared what their organizations are doing to support innovative research projects.

Dr. Baker’s group conversed about some of the challenges they face in helping patients with skin diseases, especially those with rare conditions. A few of the participants shared some examples of initiatives on which they have collaborated with NIAMS, such as patient registries. They also discussed ways in which these programs can be maintained once the NIAMS funding ends, challenges in the diagnosis of some diseases, and the importance of connecting patients to researchers.

Breakout session 2, titled "Collaborations to Foster Innovative Research and Training in Musculoskeletal Diseases," was presented by Joan A. McGowan, Ph.D., Director, Division of Musculoskeletal Diseases, NIAMS. She provided an overview of how NIAMS can collaborate with Coalition organizations to expand their research and training efforts. Dr. McGowan highlighted how some programs are fairly easy to implement and don’t require elaborate partnership agreements with the NIAMS. The Institute can help share information with NIAMS grantees about opportunities offered by Coalition groups, include Coalition representatives in NIAMS committees and review panels, and send experts to conferences hosted by Coalition partners.

Breakout session 3, titled "Partnerships in Outreach to Underserved and Minority Audiences," was presented by Mimi Lising, M.P.H., Office of Science Policy, Planning and Communications, NIAMS, and Robert Riggs of the Scleroderma Foundation. Ms. Lising updated participants on the success of the NIAMS Multicultural Outreach Initiative, which began in 2013, and how they can get involved in the next phase of the program. She also asked participants to think about what resources they feel are still needed to help them reach multicultural communities, and how they would like to collaborate with NIAMS in the future. Mr. Riggs presented a case study of a successful Scleroderma Foundation initiative aimed at reaching an underserved community. He showed how the Foundation has been able to organize and host an effective annual event to reach African Americans by considering cultural sensitivities and involving community leaders in the planning process.

Breakout session 4, titled "Communicating Effectively With Key Audiences and Stakeholders," was led by Christine O’Connor of the American Academy of Dermatology and Sarah D’Orsie of the Academy of Physical Medicine and Rehabilitation. It focused on how Coalition groups can effectively engage their audiences and stakeholders in supporting the NIAMS mission by using the right messages and communication tools for each intended audience. The presenters stressed the importance of using lay language and relevant statistics when appropriate.

Understanding the NIH: Leveraging NIH Tools and Resources

James Onken, Ph.D., M.P.H., Senior Advisor to the Deputy Director for Extramural Research, Office of Extramural Research, NIH, gave a detailed overview of the NIH Research Portfolio Online Reporting Tools (RePORT) database. This web-based tool provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH-supported research. Users can also access publications, patents and press releases that result from NIH-funded research. Dr. Onken demonstrated some of the key features of the program, and described how to create and save customized reports

Concluding Remarks

Ms. Linde thanked all the participants, organizers and speakers. She highlighted some key points from the meeting, such as the importance of strong partnerships and the value of sharing information and best practices. “This is a fantastic group, and we are lucky to have you working on our behalf,” she said. Ms. Linde concluded by reminding attendees that the NIAMS welcomes all opportunities to partner with the Coalition.

Ms. D’Orsie closed the meeting by thanking the NIAMS staff and the Coalition’s Steering Committee for making the event a success. She also announced Ms. Howard as the incoming Co-chair, and requested that attendees complete the meeting evaluation survey to inform the planning of future events.

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