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

Assessments	Study Visit
	Retrospective	Baseline	Prospective
Site Characteristics		X
Informed Consent (and/or assent, as applicable)a		X	Xa
Demographic information		X
XLH-specific Physical Exam		X
Medical history	X		X
PHEX mutationb	X		Xb
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 questionnairesc	X	X	X
Social Impact History	X	X	X

^aRe-consent to adult registry consent when patient transitions from paediatric to adult patient

^bPHEX mutation to be recorded during prospective visit if not available during retrospective visit

^cQuality of Life questionnaires used are dependent upon local clinical practices