Wearables Pilot Study Call for Participants

The Myhre Syndrome Foundation is launching a first-of-its-kind physiologic monitoring pilot for individuals living with Myhre syndrome. We are seeking 10 participants from across our global community to help us build the first real-world baseline dataset for Myhre syndrome.

This is a decentralized, at-home pilot. There are no clinic visits required. Participants will wear a small research-grade wearable device - the Empatica EmbracePlus or -Mini - continuously for six months, and record a brief daily voice journal using a simple app on their phone.

Participants will:

  • Wear the Embrace continuously (24/7) for 4–6 months

  • Record a brief daily voice journal note - just a sentence or two about anything notable from your day (fatigue, pain, activity, mood, a medical appointment, anything you feel is relevant)

The data collected will help MSF and our clinical partners understand what typical physiologic patterns look like in Myhre syndrome, information that doesn't currently exist and that is essential for designing future clinical trials in 4 domains, neurological, cardio-respiratory, ambulatory and gastrointestinal.

Fill out the participant interest form

  • We are looking for 10 individuals with a confirmed Myhre syndrome diagnosis, representing a range of ages and a range of disease impact — from those whose daily life is minimally affected to those managing more significant symptoms.

  • The Empatica Embrace is an FDA-cleared, ultra-compact wristband that is roughly the size of an AA battery and is designed specifically for long-term research studies. It is lightweight, waterproof, and designed to be worn 24/7 alongside your regular watch or bracelet. It tracks sleep, movement, activity, and light exposure passively, without any action required from the wearer. The device charges quickly and syncs automatically.Description text goes here

  • This study is conducted under the oversight of an Institutional Review Board (IRB) — an independent ethics committee that ensures research involving human participants meets rigorous standards for safety and privacy. The wearables study operates under a modified protocol connected to the MSF patient registry, which is maintained through CoRDS (Coordination of Rare Diseases at Sanford). Your data is collected, stored, and handled according to established research privacy standards, and your personal information is kept separate from study data.

  • Right now, there are no real world data objective physiologic reference points for Myhre syndrome. Without baseline data, it is nearly impossible to design a clinical trial or demonstrate that a treatment is working. Your participation directly helps close that gap.

For more information and answers to specific questions, please reach out to Armelle Pindon.