Table 1.

Overview of data elements and biosamples

Visit	Eligibility	Enrollment	In-Person Follow-Up	Remote Follow-Up
Screening Log Data
Demographics	X
Biopsy diagnosis	X
Exclusion criteria	X
Consent/assent	X	(X)a
Medical Data
Comorbidities		X	X	X
Family history		X	X
Birth history		X	Xb
Pregnancy history		X	X
Prior disease course		X
Interim disease course			X	X
Subsequent renal biopsy			X	X
Clinical trial participation		X	X	X
Medicationsc		X	X	X
Hospitalizations		X	X	X
ESKD status			X	X
Vital status			X	X
Physical exam		X	X
Vital signs		X	X
PRO Data
Symptoms		X	X	X
PRO questionnaires		X	X
Local Laboratory Tests*
Blood chemistries, Hematology studies, Coagulation studies, Rheumatologic and Infectious serologies, Urine studies		X	X	X
Central Laboratory Tests**
Serum creatinine		X	X
24-hour, morning void, or spot urine (protein, creatinine)d		X	X
Biospecimens
Blood sample, including DNA and RNA		X	X
Immortalized cell linese		X
24-hour, morning void, or spot urined		X	X

^*if measured, based on abstraction from clinic record

^**measured by CureGN laboratory

^(a)If not previously performed

^(b)If not previously collected

^(c)Immunosuppressive medication since disease onset is collected at enrollment and updated at all visits. All other concurrent medications, vaccines, and supplements are collected at all visits using a searchable database of RxNorm.

^(d)Attempts should be made to collect a 24-hour urine sample on an annual basis. For all other visits, a morning void collection in a designated, pre-labeled container should be obtained. Additionally, a spot collection should be done during the visit, noting the time of collection.

^(e)Pediatric patients only

Abbreviations: ESKD, end-stage kidney disease; PRO, patient-reported outcome.