What is included in the long-term monitoring of congenital myopathies?

Updated: Mar 11, 2019
  • Author: Matthew Harmelink, MD; Chief Editor: Amy Kao, MD  more...
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Answer

Follow-up and outpatient care depends on disease severity. In children, or a newly diagnosed patient, more frequent visits, such as every 3–6 months, can be considered. For older patients or those with milder disease, at least yearly visits are warranted.

At each visit care should be directed based on the exact needs of the patient but should also involve assessments of the following:

  • Muscle function

  • Contractures

  • Ability to perform activities of daily living

  • Cardiopulmonary function

For patients requiring more than one provider, consider a multidisciplinary approach.


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