June 1, 2013

A compilation of news from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Published three times a year. Just scan these "shorttakes" for information on what’s happening at the NIAMS, or access the complete articles for viewing or use in your own newsletter or other publication.

From the Acting Director . . .

Clinical studies are a vital component of bench-to-bedside biomedical research. The NIAMS invests significant resources in investigator-initiated clinical research focused on preventing disease, comparing treatments, identifying people who are likely to develop a condition, or testing a treatment for a rare disease. This message highlights the importance of clinical research, and the resources available to both researchers and potential study volunteers.

NIAMS supports all phases of clinical research efforts, beginning with pilot and feasibility studies that allow for innovation and the testing of new ideas. The next phases of clinical research—clinical trials planning and full implementation studies, are also critically important. We encourage our potential grantees to familiarize themselves with the NIAMS policies and guidelines for investigator-initiated clinical trials.

Researchers should also be aware of a new NIH-wide opportunity that promotes partnerships between the NIH intramural and extramural communities. This program encourages cross-cutting collaboration by opening up the NIH Clinical Research Center and its unique research resources to qualified extramural investigators.

However, the success of clinical research is largely dependent on the participation of patients and healthy volunteers, as well as providers who may refer people to studies. As a patient, the prospect of volunteering for a study can be overwhelming without knowing what it entails. It can be hard to know where to start. Many patient advocacy groups invest time in helping to connect interested patients with clinical studies. In addition, multiple websites exist to explain the process and promise of clinical research clearly, and to match the right people with researchers in need of trial participants.

  • NIH Clinical Trials and You is a great initial resource for those interested in volunteering, but who are unsure of the process.
  • Clinicaltrials.gov is the national registry and results database that describes all federally and privately supported clinical trials conducted in the United States and around the world. Clinicaltrials.gov provides comprehensive information about a trial's purpose, eligibility requirements, locations, and contact information for more details.
  • ResearchMatch! is a free, password-protected website that connects people with researchers with Clinical and Translational Science Awards around the country. Those interested in volunteering add themselves to a registry, and researchers contact potential participants who appear to be a good match for a study.
  • Current studies conducted by the NIAMS Intramural Research Program seeking participants are described on the NIAMS website.

Another valuable resource important to both patients and clinical researchers are patient registries, which are collections of anonymous patient data aggregated from multiple sources. These registries benefit both researchers and patients. Investigators can use the data to address research questions that may be difficult to answer, especially for rare diseases that do not lend themselves well to clinical study. NIAMS-related registries include data on diseases such as alopecia areata, arthritis, lupus and muscular dystrophy.

While basic research provides the needed foundation for understanding how diseases affect us, clinical studies give scientists an opportunity to bring potential new diagnostics, therapeutics and prevention strategies to the people who need them most. It is critical that we continue facilitating connections between clinical investigators and patient volunteers. We encourage you to share these resources with interested colleagues.

Robert H. Carter, M.D.
Acting Director
National Institute of Arthritis and
Musculoskeletal and Skin Diseases

Research Watch and Announcements . . .

A readily available medication may be able to safely enhance the effects of a promising experimental treatment for Duchenne muscular dystrophy (DMD).

Prompted in part by a successful clinical trial conducted at the NIH, the U.S. Food and Drug Administration (FDA) has approved the use of anakinra (Kineret) for treating the signs and symptoms of a rare but debilitating disease called neonatal-onset multisystem inflammatory disease (NOMID).

The NIH Director’s blog featured a story about a young NIAMS patient with Neonatal-Onset Multisystem Inflammatory Disease (NOMID), a rare and often fatal genetic disease.

Taking methotrexate may reduce the risk of death among patients with rheumatoid arthritis (RA). The study echoes earlier research that found that this standard treatment has protective effects among RA patients.

Vitamin D supplements likely do not improve symptoms of knee osteoarthritis (OA), according to results from a recently published clinical trial.

Scientists at the NIH, and their colleagues, have discovered that a gene called BACH2 may play a central role in the development of diverse allergic and autoimmune diseases, such as multiple sclerosis, asthma, Crohn’s disease, celiac disease, and type-1 diabetes.

Grants and Contracts . . .

For information on NIH Funding Opportunities related to the NIAMS, please subscribe to the monthly NIAMS Update or visit the Funding Opportunities List on the NIAMS website and the NIH Guide for Grants and Contracts.

Highlights From the Hill, DHHS and NIH . . .

Congressional Briefing – Psoriasis

On March 21, 2013, at the invitation of the National Psoriasis Foundation (NPF), NIAMS Director Stephen I. Katz, M.D., Ph.D., participated in a congressional briefing entitled, “Psoriasis and Your Health: The Connection with Chronic Illness” hosted by Representative Jim Gerlach (R-PA). The panel discussion focused on psoriasis research and featured Randy Beranek, President and CEO of the NPF, Erin D. Michos, M.D., assistant professor at The Johns Hopkins University, and Richard Seiden, a psoriasis patient and past chair of the NPF Board of Trustees. The event was co-sponsored by the NPF and the American Heart Association and attended by congressional and NIAMS staff, as well as researchers, patients, and advocates.

Pending Legislation – Muscular Dystrophy

On February 8, 2013, Representative Michael Burgess (R-TX) introduced H.R. 594, and on February 13, 2013, Senator Amy Klobuchar (D-MN) introduced S. 315, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Amendments of 2013. The bills would make several amendments to the Public Health Service (PHS) Act, including increasing the membership of the Muscular Dystrophy Coordinating Committee (MDCC) from 15 to 18 members to accommodate agencies that serve adults with muscular dystrophy, such as the Social Security Administration and the U.S. Administration for Community Living. The bills also would require the MDCC to meet two times a year and require the Committee to expand the plan for the various forms of muscular dystrophy to include economic and clinical care considerations for adults living with muscular dystrophy. Finally, the bills would require the MDCC to develop a plan to expedite the evaluation and approval of emerging therapies and personalized medicines. H.R. 594 was referred to the House Committee on Energy and Commerce, and S. 315 was referred to the Senate Committee on Health, Education, Labor, and Pensions.

Pending Legislation – Scleroderma

On April 9, 2013, Representative Lois Capps (D-CA) introduced H.R. 1429, the Scleroderma Research and Awareness Act. The bill would amend the PHS Act to authorize the Director of NIH to expand, intensify, and coordinate the agency’s activities with respect to scleroderma. The bill also would authorize the Secretary of HHS to carry out a public awareness education campaign. H.R. 1429 was referred to the House Committee on Energy and Commerce.

For More Information

For other related legislative highlights, please refer to the NIH Office of Legislative and Policy Analysis website.

Budget Update

FY 2013

NIH is operating under the Consolidated and Further Continuing Appropriations Act of 2013, signed by President Obama on March 26, 2013, and the sequestration provisions of the Balanced Budget and Emergency Deficit Control Act. The legislation provides funding for the NIH in the amount of $29.15 billion, which is a decrease of approximately 5.5 percent from the FY 2012 level.

The funding level for the NIAMS is $505 million, which is a decrease of approximately 5.7 percent from the FY 2012 budget. The operational funding plan for FY 2013 is available on the NIAMS website.

FY 2014

On April 10, 2013, President Obama released his FY 2014 budget request to Congress. The amount requested for NIH is $31.3 billion, which is an increase of approximately $2 billion from the FY 2013 enacted budget. The amount for NIAMS is $540.993 million, which represents an increase of $36 million or 7.2 percent above FY 2013. The FY 2014 Congressional Justification (CJ) document is available on the NIAMS website. In addition to budget tables, the CJ document includes narrative sections about the Institute’s programs and how funds will be allocated.

Francis S. Collins, M.D., Ph.D., NIH Director, testified before the Senate Appropriations Subcommittee on May 15, 2013 about the President’s FY 2014 Budget. He was accompanied by Harold E. Varmus, M.D., Director, National Cancer Institute (NCI); Anthony S. Fauci, M.D., Director, National Institute of Allergy and Infectious Diseases (NIAID); Gary H. Gibbons, M.D., M.Sc., Director, National Heart, Lung, and Blood Institute (NHLBI); Story C. Landis, Ph.D., Director, National Institute of Neurological Disorders and Stroke (NINDS); and Richard J. Hodes, M.D., Director, National Institute on Aging (NIA). Questions focused on disease-specific research underway at the agency, how the NIH collaborates with other federal agencies, and sequestration impact on activities. Dr. Collins' testimony has been posted to the NIH website.

On March 5, 2013, the House Appropriation Subcommittee on Labor, HHS, Education, and Related Agencies held an oversight hearing featuring leaders from five HHS agencies. The requested witnesses included Francis S. Collins, M.D., Ph.D., NIH Director; Patrick Conway, M.D., CMS Chief Medical Officer; Thomas R. Frieden, M.D., M.P.H., CDC Director; Carolyn M. Clancy, M.D., AHRQ Director; Mary Wakefield, Ph.D., R.N., HRSA Administrator. Questions focused on the effects of sequestration and areas of seemingly duplicative efforts were of greatest interest.

Currently, a date has not been set for a budget hearing before the House Appropriations Subcommittee on Labor, HHS, Education, and Related Agencies.

NIAMS Faces . . .

Kathy Salaita, Sc.D., has joined the NIAMS Division of Extramural Research Activities as Chief of the Scientific Review Branch. Dr. Salaita comes to us from the NIH’s Center for Scientific Review (CSR), where she held positions as a Referral Officer and as Acting Chief for the Healthcare Delivery and Methodologies Integrated Review Group. In addition to her strong background in review, Dr. Salaita was a Program Officer at the National Institute on Alcohol Abuse and Alcoholism (NIAAA) where she began her NIH career in 2001.

Mario E. Cerritelli, Ph.D., Chief, Career Development and Outreach Branch in the NIAMS Intramural Research Program (IRP), has accepted a position at the National Institute of Allergy and Infectious Diseases (NIAID) as Director of the Office of Knowledge and Educational Resources (OKER) in the Division of Extramural Activities.

After nine years at the NIAMS, Branden Brough, Ph.D., Program Analyst in the NIAMS Office of Science Policy, Planning and Communications, moved to a new position as Senior Communications and Outreach Specialist at the Lawrence Berkeley National Laboratory, Berkeley, California.

After five years at the NIAMS, Melanie Martinez, M.P.A., Public Liaison Officer in the NIAMS Office of Science Policy, Planning and Communications, has joined the FDA’s Center for Tobacco Products as a Writer/Editor in the Office of Health Communication and Education.

NIH Faces . . .

NIH Director Francis S. Collins, M.D., Ph.D., announced the selection of Jon R. Lorsch, Ph.D., as Director of the National Institute of General Medical Sciences. Dr. Lorsch is expected to join the NIH this summer.

Kudos. . .

In February 2013, John J. O’Shea, M.D., Scientific Director of the NIAMS Intramural Research Program (IRP), accepted the 2013 ARTrustTM and Stephen D. Lockey Jr., MD Lecture: Investing Together in our Future Award. He received the award from the American Academy of Allergy, Asthma and Immunology (AAAAI) in recognition of his “excellence and diligent work in the field of allergy and immunology.”

Brian Foster, Ph.D., a scientist in the NIAMS IRP, has won the 2013 Distinguished Scientist Young Investigator Award from the International Association for Dental Research (IADR). The award is given annually to early-career dental researchers who are making significant contributions to the field.

Eighteen members of the NIAMS staff have been selected for special recognition at the annual NIH Director’s Award Ceremony to be held on Wednesday, June 12.

Raphaela T. Goldbach-Mansky, M.D., M.H.S., Dawn Chapelle, N.P., Bahar Kost, Nicole Plass, R.N., B.S.N., M.P.A., LCDR, U.S. Public Health Service, Frank Pucino, Pharm. D., Cailin Sibley, M.D., M.H.S., Cheryl Talar-Williams and Shaila Farooque are being honored as part of the NOMID Group for sustained achievement in bringing the treatment of NOMID and IL-1 blockade from conception to FDA approval.

John J. O’Shea, M.D., Yuka Kanno, M.D., Ph.D., Vittorio Sartorelli, M.D., and Golnaz Vahedi, Ph.D., are being honored as part of the Gene Regulation Team for outstanding contributions in the area of gene regulation and immunology.

Fei Wang, Ph.D., is being honored as part of the NIBIB Group Award for the NIH Contributions to the Armed Forces Institute for Regenerative Medicine Group.

Gahan Breithaupt, M.B.A., is being honored as part of the OD Group Award for the Telework and Flexible Work Schedules Workgroup.

Helen Lin, Ph.D., is being honored as part of the OD Group Award for the Enhancing Peer Review Survey Consultant Group.

William J. Sharrock, Ph.D., is being honored as part of the OD Group Award for the NIH Genome-Wide Association Studies Governance Committee.

Jim Witter, M.D., Ph.D., is being honored as part of the NIDA Group Award for the OPPNET Coordinating Committee.

Carl Baker, M.D., Ph.D., is being honored as part of the NHGRI Group Award for the Human Microbiome Project.

NIAMS Communications Update. . .

Multicultural Outreach

In March, the NIAMS concluded its nationwide distribution of four tailored health planners for multicultural populations as part of its National Multicultural Outreach Initiative (NMOI). The purpose of the health planners is to increase awareness among adults with conditions of the bones, joints, muscles, and skin about the availability of resources from the NIH and other Federal agencies. The health planners were distributed in 48 states and five U.S. territories, and the NIAMS Information Clearinghouse received approximately 1,000 inquiries on the planners and related health information. The NIAMS also developed and launched an electronic toolkit to assist organizations with promoting the health planners and available resources for multicultural communities. As a result of the planner and electronic toolkit distribution, there were 3,100 visits to the NMOI website and 1,100 visits to the e-toolkit page. The NIAMS is evaluating its national distribution effort; results will help inform future directions.

Public Liaison

NIAMS Coalition Activities

The Institute continues to work with the NIAMS 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, a group of nearly 90 professional and voluntary organizations, raises awareness about research into the basic understanding, causes, incidence, treatment and prevention of diseases of the bones, joints, muscles, skin, and connective tissues.

In 2013, the Institute has engaged with the Coalition on several activities, including presenting at professional and voluntary meetings and providing opportunities to meet with Institute leadership. The NIAMS also is collaborating with the Coalition to host teleconferences and visits to the NIH campus.

On May 2, the Institute hosted the Coalition Steering Committee on campus for a tour of NIAMS laboratories. Ten members of the Steering Committee, which leads the Coalition, heard presentations from Institute leadership including Robert H. Carter, M.D., Joan A. McGowan, Ph.D., Laura K. Moen, Ph.D., and Richard Siegel, M.D., Ph.D. They also visited the labs of Mahendra S. Rao, M.D., Ph.D., Richard Siegel, M.D., Ph.D., and Raphaela Goldbach-Mansky, M.D., M.H.S., and learned about new technologies that are helping researchers better understand diseases of the bones, joints, muscles, and skin, and potentially translate basic findings into treatments for individuals affected by these diseases. The Steering Committee also took a tour of the NIH Clinical Research Center.

On May 21, the NIAMS co-hosted a NIAMS Coalition teleconference with Coalition Co-chairs Kim Cantor of the Lupus Foundation of America and Sarah D’Orsie of the American Academy of Physical Medicine and Rehabilitation. The teleconference, which featured Robert H. Carter, M.D., highlighted NIH and NIAMS research initiatives, as well as results from research investments.

Media Highlights

Richard Siegel, M.D., Ph.D., IRP Clinical Director, and Raphaela T. Goldbach-Mansky, M.D., M.H.S., Acting Chief of the Translational Autoinflammatory Disease Section, were interviewed by MedPage Today for an article on autoinflammatory diseases. The feature, “In Depth: Tracking an Emerging Disease Concept,” can be accessed on the MedPage Today website.

In response to his Nature News & Views piece, “Autoimmunity: Rubbing salt in the wound,” NIAMS IRP Scientific Director, John O’Shea, M.D., was interviewed for stories in a variety of publications, including Science, HealthDay, The Scientist, and Scientific American.

Joan A. McGowan, Ph.D., Director of the NIAMS Division of Musculoskeletal Diseases, was featured in an article on bone health for The Huffington Post. The story, “Bone Health And Your Diet: The Worst Foods For Your Bones,” can be viewed online.

NIAMS Laboratory of Stem Cell Biology Chief, Mahendra S. Rao, M.D., Ph.D., appeared in the Scientific American feature, “What’s Next for Stem Cells and Regenerative Medicine?” Rao provided an overview of possible future developments in the field.

Upcoming Events

Look for the NIAMS exhibit at the following events between now and the September 2013 Shorttakes issue:

  • Organization of Chinese Americans Annual Conference, Washington, DC, July 18-21
  • Arthritis Foundation National Juvenile Arthritis Conference, Anaheim, CA, July 18-21
  • National Black Nurses Association Annual Conference, New Orleans, LA, July 31-August 4
  • National Association of Hispanic Nurses Annual Conference, New Orleans, LA, August 6-9

NIAMS Career Development and Outreach Update. . .

Approximately 20 students from diverse backgrounds will participate in the 2013 NIAMS Summer Internship Program. The summer internship program provides a unique opportunity for talented students to come to the NIAMS for training and mentoring. This program encourages students to work in the field of biomedical research and, in particular, in the disease areas that NIAMS supports.

On February 28, 2013, three NIAMS Career Development and Outreach (CDOB) staff members attended a special assembly, “Science Careers Exploration,” at Magruder High School in Rockville, MD. Dr. Cerritelli presented an overview of the NIH and current research initiatives and training programs, and two NIAMS post bacs conducted hands-on science demonstrations.

Also, as part of the above “Science Careers Exploration” initiative, approximately 40 students from Magruder High School visited the NIH campus on March 21 for a tour of the Clinical Center and the Metabolic Clinical Research Unit of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The students also had the opportunity to interact with NIAMS investigators.

On March 13, CDOB staff participated as judges in the annual Woodrow Wilson Senior High School’s Annual Science Fair. The projects were in these categories: Biochemistry/Microbiology/Cell-Molecular Biology/Chemistry; Math/Computer Science/Physics/Astronomy; Engineering/Earth-Planet/Environmental/Energy/Transportation; Behavioral Social Science/Medical; and Plant/Animal.

The NIAMS continues its leadership role in the NIH Warrior Transition Program by meeting with wounded service members at career fairs that take place monthly at the Walter Reed National Military Medical Center, Bethesda, MD. CDOB staff members discuss ways in which the wounded warriors can transition back into the civilian workforce through part-time training opportunities available at NIAMS/NIH.

For information on arthritis and musculoskeletal and skin diseases, including copies of NIAMS publications, contact:

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov
Website: https://niams.nih.gov

If you need more information about available resources in yourlanguage or another language, please visit our website or contactthe NIAMS Information Clearinghouse at NIAMSinfo@mail.nih.gov.

For information on osteoporosis and other bone diseases, contact:

NIH Osteoporosis and Related Bone Diseases ~ National Resource Center

2 AMS Circle
Bethesda, MD 20892-3676
Phone: 202-223-0344
Toll free: 800-624-BONE (2663)
TTY: 202-466-4315
Fax: 202-293-2356
Email: NIHBoneInfo@mail.nih.gov
Website: http://www.bones.nih.gov

If you need more information about available resources in yourlanguage or another language, please visit our website or contactthe NIAMS Information Clearinghouse at NIAMSinfo@mail.nih.gov.

For general information on NIAMS and its research programs, contact:

Office of Science Policy, Planning and Communications
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health

Building 31/Room 4C02
31 Center Drive, MSC 2350,
Bethesda, MD 20892-2350
Phone: 301-496-8190
TTY: 301-565-2966
Fax: 301-480-2814
Email: niamsinfo@mail.nih.gov
Website: https://niams.nih.gov

If you need more information about available resources in yourlanguage or another language, please visit our website or contactthe NIAMS Information Clearinghouse at NIAMSinfo@mail.nih.gov.

For information on NIAMS Research Registries:

Compiled by the Office of Science Policy, Planning and Communications, NIAMS; phone: (301) 496-8190; e-mail: NIAMSInfo@mail.nih.gov

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