The NDB is conducting a project called "Lupus in the Community," and we need the help of doctors with Lupus patients.

Much of what is known and published about SLE comes from the work of a small number of academic centers. However, community rheumatologists provide most of the care for systemic lupus in the United States, but often their work and skill is undervalued or unrecognized.

Behind this project is the idea that we can understand lupus and its care and outcomes better if we study it in the community rather than in tertiary centers.

Even if you have just a few lupus patients, you can help. If you think you might be interested in helping with such a project, or if you want to learn more, contact Dr. Fred Wolfe by email or call 1-800-323-5871 ext. 143. We will send you additional details. We hope that you might consider being a member of this project and a coauthor of its reports.

Robert S. Katz, M.D. RKatzChIl@aol.com
Director, SLE in the Community (SLEC)

Fred Wolfe, M.D. fwolfe@arthritis-research.org
Director, National Data Bank for Rheumatic Diseases

How the study works

At the first clinic visit, doctors give each SLE patient a package that contains:

  • Consent Forms - 1 copy for patient to keep and 1 copy to be returned to NDB
  • Contact Sheet - to be filled out by patient
  • Welcome Letter - for patient to keep

During the first clinic visit, ask SLE patients to:

  • Read the Consent Form carefully
  • Sign and date both Consent Forms (patient keeps 1 copy and gives 1 to physician/staff)
  • Fill out the Contact Sheet

During the first clinic visit, physician and/or staff will complete:

  • SLE Criteria (1-page form, obtained one-time only)
  • Lupus Activity Index (1-page form)

Put completed forms in the postage-paid envelope provided and mail to NDB for processing:

  • Consent Form dated and signed by patient
  • Contact Sheet with patient's information
  • SLE Criteria Form
  • Lupus Activity Index Form

Upon receipt of the above forms, NDB research staff will follow-up directly with SLE patients to register them in the SLEC Study. Patients will then be sent SLEC Study questionnaires approximately every 6 months for the duration of the study.

If you have questions or need more materials:

316-263-2125, x143 - Kimberly Harp, SLEC Project Director

316-263-2125, x119 - Rebecca Schumacher, NDB Executive Director