Table 1.
| XLH patient management plan Vienna Bone and Growth Centre | Interval |
|---|---|
| Clinical monitoring | |
| Including height, BMI, BP, head circumference, deformity monitoring, neurological examination | |
| Rapid growth phases | 3‑monthly |
| Significant treatment changes | 3‑monthly |
| Stable phase | 6‑monthly |
| Quality of life monitoring | |
| PedsQL | 3–6-monthly |
| VAS | 3‑monthly |
| Functional monitoring | |
| 6MWT | 12-monthly |
| PEDI‑D | 24-monthly |
| Lab monitoring | |
| Conventional treatment | |
| Ca, P, Ca/Crea ratio, ALP | 3‑monthly |
| PTH, 25(OH)D | 6‑monthly |
| Burosumab | |
| Initial phase: P, Ca, TmP/GFR | Week 2, 4, 8, 12 |
| Stable phase: P, Ca, TmP/GFR | 3‑monthly |
| PTH, 25(OH)D, 1,25(OHD), UCa/Crea | 6‑monthly |
| Bone imaging | 12–24-monthly |
| Kidney ultrasound | |
| Regular findings | 24-monthly |
| Hypercalciuria/nephrocalcinosis | 12-monthly |
| Orthopaedic monitoring | 6–12 monthly |
| Dental monitoring | 6‑monthly |
| Cranial MRI | If indicated |
| Cardiac ultrasound | If hypertensive |
XLH X-linked hypophosphatemic rickets, BMI body mass index, BP blood pressure, PedsQL pediatric quality of life inventory, VAS visual analogue scale, MWT 6 minute walking test, PEDI-D pediatric evaluation of disability inventory, Ca calcium, P phosphate, Crea creatinine, ALP alkaline phosphatase, PTH parathyroid hormone, TmP/GFR ratio of the maximum rate of tubular phosphate reabsorption to glomerular filtration rate, 25(OH)D 25-hydroxycholecalciferol, 1,25(OHD) 1,25-dihydroxycholecalciferol, UCa/Crea urinary calcium to creatinine ratio