Ultragenyx

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Profile & study

Participant context and how observations flow into Knowrisk.

Participant Profile

Ethan M.

Age

7

Diagnosis

Angelman Syndrome

Enrollment

May 8, 2025

Study arm

Active Treatment

Dose group

Medium

Observation window

Week 8

Connected Devices

Streaming continuous wearable evidence

  • Apple Watch

    Ethan · Battery 78%

    Live

  • Oura Ring

    Caregiver · Battery 64%

    Live

  • Fitbit

    Available

  • Garmin

    Available

  • Whoop

    Available

Health Data Sources

What flows into the evidence stream

Patient Wearable

Apple Watch · Ethan

Active
SleepActivityMovement

Caregiver Wearable

Oura Ring · Caregiver

Active
SleepRecoveryRestfulness

Assessments

Bayley-4 — administered by the study team

Reference

Baseline

Jun 12

65

Most recent

Aug 21

72

Next

Oct 16

—

Communication

72

+7

Motor

68

+4

The companion never administers, scores, or replaces the Bayley-4.

Evidence Data Flow

From caregiver to Knowrisk Neuro Evidence OS

Patient & Caregiver Data

Continuous + caregiver-reported

SleepCommunicationSeizure DiaryCaregiver BurdenQoLWearables

Knowrisk Neuro Evidence OS

Longitudinal evidence platform

Medical Evidence

Market Access

Clinical Engagement

AI & Data

Account & Study

  • Privacy & consent

  • Study documents

  • Caregiver account

ION582 Longitudinal Observation Study · Demo build