The SICCA International Registry

We are conducting a study of Sjögren’s syndrome at the Johns Hopkins University. The study, called SICCA (Sjögren’s International Collaborative Clinical Alliance), is being coordinated at the University of California, San Francisco and also includes research sites in Philadelphia, China, Japan, India, Argentina, Denmark and the United Kingdom. The study goals are to improve the diagnosis and treatment of the disease. The National Institutes of Health are funding this study.

If you are interested in participating in SICCA:

At the study visit, the following will take place:

  • We will ask you to sign a consent form to participate in the study
  • A clinician will examine your eyes and mouth
  • A clinician will palpate your lymph nodes, joints, liver and spleen.
  • Observations will be made of your skin
  • A labial salivary gland biopsy will be performed
  • Blood will be collected (approximately 7 tablespoons)

If you are interested in participating or would like additional information, please call our Clinical Coordinator, Anthony Keyes at 410-550-6259 or email us.  No one will call you about the study unless you contact us first.

Participation in SICCA is completely voluntary. If you do not wish to participate and do not wish to call about the study, your medical treatment will not be affected.

All information for this study is collected under authority of the U.S. Public Health Service Act (42 USC 285h). It will be kept confidential in accordance with Federal regulations and will be used for research purposes. Names or other identifying information will not appear in any publication resulting from the study; survey results will be published only as statistical summaries.

Participation in the survey is voluntary, and failure to cooperate will not result in any penalty or loss of benefits.