Tele-Clinic Visits in Pediatric Marfan Patients Using Parental Echo: The Future?

Not Recruiting

Trial ID: NCT03581682


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.

Official Title

Tele-Clinic Visits in Pediatric Marfan Patients Using Parental Echo: The Future?

Stanford Investigator(s)


Inclusion Criteria:

   - 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

Exclusion Criteria:

   - prior aortic surgery

   - known cardiomyopathy

   - known arrhythmia

   - aortic root > 4.5 cm in prior clinic visit

   - pregnancy


other: Tele-Clinic Visits Using Parent-Acquired Echos

Not Recruiting

Contact Information

Stanford University
School of Medicine
300 Pasteur Drive
Stanford, CA 94305
Seda Tierney, MD