NIDCR Plans to Fund International Sjogren's Patient Registry

The National Institute of Dental and Craniofacial Research (NIDCR) is planning to establish an international registry for Sjogren's patients.

The new registry is seen as a valuable step forward for people with Sjogren's syndrome. It will serve as a resource to promote and facilitate future research studies and clinical trials for Sjogren's syndrome.

Because so little is known about the causes of Sjogren's and how it develops, most treatments to date focus on temporary relief of the symptoms.

Therefore, there is a clear need to raise the understanding of the prevalence of Sjogren's syndrome and its impact on oral and general health.

The registry, as envisioned, will provide an accepted standard for diagnosing Sjogren's, a well defined patient population, and offer biological specimens for gene and tissue research and to test therapeutic strategies.

"I am so gratified by this good news," said Elaine Alexander, MD, PhD, member of the SSF Government Affairs Committee, and Counselor to the Foundation's Medical & Scientific Advisory Board. "I sincerely believe this registry will be a major advance which will provide a catalyst for basic research, drug discovery and development in this important, but often neglected, autoimmune disease."

Although NIDCR is the lead institute in Sjogren's syndrome research, there are only a few projects studying the origins and development of the disease. The slow progress in this area of oral medicine stems from the lack of information on how salivary glands work. The registry will help researchers start to understand the underlying causes of salivary gland disorders in order to develop treatment strategies.

The availability of such a resource of patient information and collection of biological specimens should serve to attract scientists from different scientific disciplines to address problems related to Sjogren's syndrome.

To learn more about the NIDCR Sjogren's syndrome registry visit www.nidr.nih.gov/

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