June 20, 2013
Photo: Stephen I. Katz M.D. Ph.D.
Photo: Stephen I. Katz M.D. Ph.D.

Dear Colleagues:

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 month’s letter 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.

Stephen I. Katz, M.D., Ph.D.
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health

Last Reviewed: 06/20/2013