Table 2 Schedule of Assessments for Data Recording. Assessments in bold and italics are mandatory. All others are to be recorded on an if completed basis

Site Characteristics

X

Informed Consent (and/or assent, as applicable)^a

X

X^a

Demographic information

X

XLH-specific Physical Exam

X

Medical history

X

X

PHEX mutation^b

X

X^b

XLH medications

X

X

X

Concomitant Medications

X

Radiographs and imaging

X

X

X

Physical examination (including dental and audiological assessments)

X

X

X

Vital signs (e.g. heart rate, blood pressure)

X

X

X

Growth assessments (e.g. Height, weight, head circumference)

X

X

X

Physiotherapy

X

X

X

Echocardiogram

X

X

X

Electrocardiogram

X

X

X

Audiology

X

X

X

Renal ultrasound

X

X

X

Patient assessment tools/outcome measures

X

X

X

Exercise Tolerance Tests

X

Patient Quality of Life questionnaires^c

X

X

X

Social Impact History

X

X

X