Table 1.
Area | Measurement | Initial Visit | Follow-Up Visits
|
||
---|---|---|---|---|---|
Every 3 to 6 mo | Years 1, 3, 5, 7 | Years 2, 4, 6, 8 | |||
| |||||
General | Physical exam/ medical history | X | X | X | X |
Medication use | X | X | X | X | |
Symptom checklist | X | X | X | X | |
| |||||
Kidney | mGFR** | X | X | ||
Renal panel | X | X | X | ||
UPCR (first morning urine) | X | X | X | ||
Cystatin C-based eGFR | X | X | |||
serum creatinine*** | X | X | X | ||
Local laboratory tests† | X | X | X | ||
| |||||
Cardiovascular | Echocardiogram | X | |||
ABPM | X | ||||
Carotid IMT* | X | ||||
Lipid profile | X | ||||
Blood pressure | X | X | X | X | |
| |||||
Neurocognitive | Pediatric Quality of Life survey | X | X | X | |
Cognitive and development | X | X | |||
Behavioral assessment | X | X | |||
Magnetic resonance imaging* | X | X | |||
Neuropsychological assessment* | X | X | |||
| |||||
Growth and Nutrition | Height and length | X | X | X | X |
Weight | X | X | X | X | |
Head and mid-arm circumference | X | X | X | X | |
Tanner stage | X | X | X | X | |
3-day diet record, food frequency | X | X | X | ||
Physical activity | X | X | X | ||
| |||||
Inflammation | Wide-range C-reactive protein | X | X | ||
| |||||
Bone Health | Intact PTH | X | X | ||
Bone biopsy**** | X | Year 2 only |
Included renal panel, complete blood count, and urine pregnancy test
goal to do in 30 patients at select centers
based on iohexol clearance
measured by high-performance liquid chromatography
goal to conduct 10.
Abbreviations: mGFR, measured glomerular filtration rate; UPCR, urine protein-creatinine ratio; eGFR, estimated glomuler filtration rate; ABPM, ambulatory blood pressure monitoring; IMT, intramedial thickness; PTH, parathyroid hormone.