Response to Diaphragmatic Pacing in Subjects with Pompe Disease
The purpose of this research study is to evaluate the effect of diaphragm pacing on breathing function in people with Pompe disease. You will be in this study for approximately six months. However, you will have the opportunity to participate in the extension phase of this study for up to six years.
If you agree to participate in this study, reports from your standard of care testing and copies of images from standard of care testing will be collected and added to the study record.
The study team will follow you closely the first 6 months after DPS placement to see if your breathing function changes after the pacemaker is placed. The study team will contact you by phone or by video conference every at least twice a month to ask questions about how you are feeling and how many hours per day you are pacing and how many hours per day you are using ventilator assistance.
In addition, you will be asked to complete questionnaires about your medical history and your daily activities including a pacemaker diary and ventilator diary.
Pulmonary function testing, or special breathing tests that measure changes in your breathing pattern, will be completed by the study team during the course of the study.
- Diagnosed with Pompe disease
- 2-65 years old
Additional eligibility criteria apply. Please contact Jessica Ehrbar for more information about this study:
- (352) 273-6855
Can be done from home
Principal InvestigatorBarbara Smith, PT, PhD
Begin a new search for other research studies
Studies listed on this site have been approved by a UF Institutional Review Board (IRB), which works to ensure the welfare and rights of research participants as required by federal regulations. Study listings are provided by the UF Clinical and Translational Science Institute in collaboration with UF research teams and the UF IRBs.