Tele-Clinic Visits in Pediatric Marfan Patients Using Parental Echo: The Future?
Completed · Not applicable
Conditions studied: Marfan Syndrome
In brief
Marfan syndrome (MFS), a connective tissue disorder seen in 1 in 3,000 individuals, causes progressive aortic root dilation that can result in aortic dissection and sudden death. Clinical care focuses on monitoring the aortic root by serial echocardiography (echo) to guide medical treatment and elective aortic root surgery in a specialized clinic every 6-12 months. This monitoring protocol, coupled with surgical intervention, has doubled the median life expectancy which was previously only 32 years. However, this surveillance carries significant health care costs at \>$50 million dollars/year on echos alone (at $3-4K each) in children and adolescents in the US, as well as substantial burden on families residing far from specialized centers. A clinic visit delivered to MFS patients via live-video conferencing at home (tele-visit) could shift this paradigm, if a home echo could be obtained. Here, the investigator will train parents of Pediatric Marfan patients to take echo images using a hand held device, height, weight, blood pressure, medical history, and listen to the heart of their child. Then, the investigators will ask them to take the equipment home and collect the same data at home during a tele-clinic visit, with further instruction by the study team through secure live-video conferencing.
Key facts
- Study ID
- NCT03581682
- Run by
- Stanford University
- People needed
- 15
- Starts
- 2018-07-01
- Expected to finish
- 2020-08-01
- Last updated by the study team
- 2021-03-17
Who can join
Age: 5 and older, up to 19. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 5-19 years of age (patient)
- seen in at least 2 prior clinic visits
- Marfan syndrome by revised Ghent criteria
- presence of parent at home
You may not qualify if…
- prior aortic surgery
- known cardiomyopathy
- known arrhythmia
- aortic root > 4.5 cm in prior clinic visit
- pregnancy
Where it is running
- Lucile Packard Children's Hospital — Palo Alto, California, United States
Full record on ClinicalTrials.gov
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