National Registry for TMJ Patients.

BOSTON--(BW HealthWire)--Oct. 8, 1998--While people who suffer the effects of TMJ (Temporomandibular Joint Disorder) await a cure for their condition, there will soon be a place where they can share symptoms and other health information that will contribute to future research and a cure for TMJ. The Jaw Joints & Allied Musculo-Skeletal Disorders Foundation (JJAMD), the nation's premier TMJ patient education and advocacy organization, located at the Forsyth Research Institute in Boston, today announced definitive plans for the establishment of a national registry to collect health care data from TMJ patients and providers of medical services across the country.

Renee and Milton Glass, co-founders and co-presidents of JJAMD, said the establishment of a registry where health care providers can enter data about TMJ disorders is a major step forward in understanding the frequency, etiology, and demographics of this debilitating multi-faceted disorder. "Since the prevalence of TMJ is uncertain, and because there is controversy concerning the outcome of treatments for the disease, a registry is an essential component to any research that might help TMJ patients," they said.

The Glasses said they hope the registry information will prove valuable in understanding the real-life impact on TMJ patients. "The follow-up process can serve as the basis of outcomes study of the treatment of TMJ," they concluded.

TMJ describes the physical disorders associated with jaw joints that attach the lower jaw to the temporal bones in the skull as well as disorders and disease associated with the related muscles of mastication, connective tissue and other components of the temporomandibular (jaw) joints. TMJ disorders have been attributed to arthritic changes in the joints, blows to the head and mouth, whiplash, falls, sports injuries, medical or dental treatments (iatrogenic causes) or misdiagnosis, as well as other trauma and disease.

While difficult to accurately diagnose, TMJ symptoms include pain and dysfunction in the head, face, neck and shoulders that radiate throughout the entire body. Multiple headaches and pain in the face, sinuses, ears, eyes, teeth, neck muscles, back and leg pain are other frequently-noted symptoms. Clicking and grating in the jaw joints, inability to open or close the mouth freely and difficulty in chewing and swallowing are also evidence of potential TMJ conditions--which can be transitory or sometimes chronic.

Organized in 1982 as a non-profit health educational foundation, JJAMD has become the repository of information from TMJ patients around the world in response to surveys and self-help information it provides directly to patients and on the world-wide web through the "Healthtouch" health information system. JJAMD has sponsored its own published patient-oriented research, has facilitated the formation of patient self-help/support groups, has sponsored free public seminars and lectures, and has organized and run conferences for professionals on the subject of TMJ. Survey information generously supplied by TMJ patients provides a natural bridge toward a more comprehensive registry, which will advance this subject into a more scientific framework and impel movement toward prevention and ultimate cure of TMJ.

JJAMD can provide further information about this unique and forward-thinking plan for what will be the first national TMJ Registry.