Table 5:
Characteristics of NURTuRE-INS compared with other large national or international NS cohorts (N > 500)
| Cohort | NURTuRE-INS | International study of NS (International NephroS) | NS Study Network (NEPTUNE) | Insight into NS (INSIGHT) | European Rare Kidney Disease Reference Network (ERKNet) |
|---|---|---|---|---|---|
| Country | UK | India, Sri Lanka and South Africa | USA | Canada | Europe |
| NS patients, n | |||||
| Total | 739 | 892 | 729 | 631 | 1 062 869 (82%) |
| By age at recruitment: | |||||
| Adults (≥18 years) | 469 (63%) | 70 (8%) | 355 (49%) | Not recruited | |
| Children (<18 years) | 270 (37%) | 822 (92%) | 374 (51%)a | 631 (100%)b | 220 (21%)c |
| Inclusion criteria | Congenital NS, SSNS, SRNS (primary resistance), SRNS (secondary resistance), INS as part of a syndrome, FSGS or MCD | Congenital NS, SSNS, SRNS (primary resistance), SRNS (secondary resistance), INS as part of a syndrome, FSGS or MCD | FSGS, MCD, membranous nephropathy or non-biopsied and treatment naïve paediatric patients with NS | Incident diagnosis of NS and age 6 months–18 years | Congenital NS, congenital NS—Finnish type, SSNS, SRNS (secondary resistance), genetic SRNS, SRNS (sensitive to second-line immunosuppression), SRNS (multidrug resistant) or NS not otherwise specified. Other rare non-NS disease groups are also recruited |
| Exclusion criteria | Secondary NS | Secondary NS | Prior solid organ transplant, evidence of other renal disease, known systemic disease with life expectancy <6 months | Secondary NS, congenital NS, syndromic disease with multiple organ involvement | |
| Data and sample collection | Sociodemographic and clinical data | Sociodemographic and clinical data | Sociodemographic and clinical data | Sociodemographic and clinical data. | Sociodemographic and clinical data |
| Blood, DNA, RNA, urine and renal histology samples as well as waste plasma exchange fluid | Blood, DNA, RNA and urine samples | Blood, DNA, urine and renal histology samples | Blood, DNA, urine and toenail clipping samples | ||
| Recruitment started | 2017 | 2017 | 2010 | 2011 | 2018 |
| Recruitment completed | 2023 | 2022 | Ongoing—estimated 2024 | Ongoing | Ongoing |
| Follow-up | At disease relapse or transplantation. | At disease relapse or transplantation | Minimum of 30 months | 5 years | Ongoing—minimum of annual data collection. |
| At least 6 months after recruitment. | |||||
| Automated prospective follow-up of routine clinical information and testing—ongoing | |||||
| Access to data and samples | Applications for sample access can be made to the SOAC via Kidney Research UK | Not explicitly stated | Applications for data and sample access can be made via the NEPTUNE website (https://www.neptune-study.org/ancillary-studies) | Not explicitly stated | Applications for data access can be made via the registry website (https://www.erknet.org/patients-registry/data-access-requests) |
Patient numbers came from apersonal communication, bPrediction of Short- and Long-Term Outcomes in Childhood Nephrotic Syndrome (sickkids.ca) and chttps://www.erknet.org/.