Lingual Muscle Training in Late-Onset Pompe Disease (LOPD)
Status
Completed
Conditions
Glycogen Storage Disease
Treatments
Other: Lingual Muscle Training
Details and patient eligibility
About
This study is being done to test the effects of Lingual Muscle Therapy (LMT) in patients with Late-Onset Pompe Disease (LOPD) who have tongue weakness. The results of this study will help design future research studies about LMT in LOPD.
Enrollment
5 patients
Sex
All
Ages
12+ years old
Volunteers
No Healthy Volunteers
Inclusion criteria
- Age ≥ 12 years
- Lingual weakness as measured by quantitative muscle testing (≤ 5% lower limit of normal for stratified age)
- Confirmed diagnosis of LOPD
- On enzyme replacement therapy for ≥ 26 weeks at pretest
- Able to follow directions for study participation
- Able to complete a home-based LMT regimen
- Access to reliable internet connection
- Access to use of electronic device that allows for FaceTime, Jabber, or WebEx use
Exclusion criteria
- Neurodegenerative conditions (e.g. stroke, dementia) or other serious neurologic condition that would prevent meaningful study participation as determined at the discretion of the principle investigator
- Any current or past history of seizures.
- Head and neck cancer or radiation treatment to head/neck
- Inability to tolerate IOPI device tongue bulb
- Inability to give legally effective consent
- Inability to read and understand English
Trial design
Primary purpose
Treatment
Allocation
N/A
Interventional model
Single Group Assignment
Masking
None (Open label)
5 participants in 1 patient group
Late Onset Pompe Disease who have tongue weakness
Experimental group
Treatment:
Other: Lingual Muscle Training
Trial contacts and locations
1
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Data sourced from clinicaltrials.gov
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