Neuromuscular Disease Clinical Trial
Official title:
Home Sleep Testing in Neuromuscular Disease Patients
Lay Summary Patients with severe neuromuscular develop hypoventilation, which leads to
elevated carbon dioxide levels. Measuring only oxygen saturation levels with pulse oximetry
may be inadequate. End tidal carbon dioxide levels or arterial blood gases should be
measured periodically, depending on the clinical condition of the patient. A thorough review
of systems will help define any problems. Patients who are hypoventilating often have
elevated carbon dioxide levels at night and complain of a morning headache, restlessness or
nightmares, and poor quality sleep. This may cause daytime sleepiness. Insufficient
respiration with hypoxia may occur later, especially if the lung is damaged by chronic
aspiration.
We propose to evaluate the use of the Nonin LifeSense monitor in home evaluation of
respiration, oxygen level, heart rate, and carbon dioxide level and to develop
interpretation of the results that will lead to appropriate interventions for apnea, and
insufficient respiration.
Relevance to MDA Fewer than one per cent of the Muscular Dystrophy Association have
pulmonologists as co-directors.Late referral of progressive restrictive lung disease leads
to invasive support of respiratory failure. Early initiation of non invasive ventilation
techniques requires patience on the part of the caregiver and exploration of mask interfaces
and ventilation techniques. In addition, the development of new therapies, currently
manifested through enhanced diagnostic accuracy, will require new signal for initiation and
in the assessment of success or failure.
Aims Aim 1. To assess the utility of a small portable device (LifeSense Monitor Nonin
Medical Inc. Plymouth Minnesota) with extended recording capabilty to provide accurate
diagnosis of hypoventilation.
Aim 2. To provide an easily interpretable report defining sleep hypoxemia, hypercapnea, and
apnea.
Aim 3. To promote early evaluation and treatment of the respiratory problems in centers that
do not have pumonologists as these are essential to prognosis, whether of survival or of
quality of life, in neuromuscular diseases.
n/a
Observational Model: Case-Only, Time Perspective: Prospective
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