When it comes to the treatment of rare diseases, if your doctor isn’t reading the latest in research–he’s missing out on the benefits of new treatments–and so are you.

As patients, we can only urge our physicians to continue their education, but today, the Endocrine Society has made that effort a little easier with the reveal of their Clinical Practice Guideline (CPG) for the diagnosis and treatment of Paget’s disease of the bone, a condition where one or more bones in the body become oversized and weak.

The CPG, entitled “Paget’s Disease of Bone: An Endocrine Society Clinical Practice Guideline,” will appear in the December 2014 issue of the Journal of Clinical Endocrinology and Metabolism (JCEM), a publication of the Endocrine Society.

About one million people nationwide have Paget’s disease of the bone, according to the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases. Among people who are older than 55 years, an estimated 2 to 3 percent have Paget’s disease. The condition is rare in people who are younger than age 40.

Recommendations from the CPG include:

  • As part of the diagnostic process, plain radiographs should be taken of suspicious areas of the skeleton.
  • Following a diagnosis, measurements of the patient’s serum total alkaline phosphatase (ALP) levels, or a more specific bone marker when appropriate, should be performed to determine the extent of the damage.
  • People who have both Paget’s disease and abnormal liver function – either in the organ itself or the biliary tract – should undergo a measurement of a specific bone marker to assess response to treatment or, in an untreated patient, determine the disease’s course.
  • Since many patients do not report feeling pain when the disease activity recurs, patients should undergo testing for bone markers to determine if they are relapsing.

Learn more about the Endocrine Society’s educational efforts on their website here.

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