An observational study in Oculopharyngeal Muscular Dystrophy, sponsored by University of New Mexico. Withdrawn. Open to participants aged 18 Years to 99 Years. Per ClinicalTrials.gov, last updated 2022-05-27.
Sponsored by University of New Mexico · Observational
The objective of this study is to test a set of clinical outcome measures longitudinally in a cohort of OPMD patients to identify ones that show quantifiable change over time as the disease progresses. The investigators' goal is to delineate the natural history of OPMD.
OPMD patients will undergo a screening evaluation and testing to confirm the participants carry the OPMD mutation. Subjects fulfilling the inclusion/exclusion criteria will be enrolled and followed prospectively at regular intervals to determine the natural history of this disease. Measures of muscle function and swallowing will be made at baseline and at follow-up visits to measure natural clinical progression.
University of New Mexico is the lead sponsor of 312 studies on the registry; 28 are open to participants now.
Of its 25 completed or terminated interventional studies of FDA-regulated products, 23 (92%) have results posted.
Counted across the registry records on this site, refreshed daily.
Genetically Confirmed Oculopharyngeal Muscular Dystrophy
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
The study cohort consists of individuals with genetically confirmed OPMD who will be followed longitudinally using periodic standardized assessments of clinical status in an observational, non-interventional study.
Other: Non-interventional study
Non-interventional study
Muscle Strength over time
Change in Manual muscle testing over time
Time frame: Baseline and every 9 months for 3 years
Dysphagia severity over time
Videofluoroscopic Swallow Studies
Time frame: Baseline and every 9 months for 3 years
No study locations are listed for this record.
Plan to share: No
No publications or documents are linked to this record.
Ran from Dec 2016 to primary completion in Jul 2018, 19 months.
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This study is withdrawn, as verified in May 2017. You cannot join it, but the record below documents what was studied.
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Muscular Dystrophy, Oculopharyngeal