This page is designed to support nephrology researchers by guiding you to a variety of publicly available data sources, from patient-level registries to multi-omic datasets. Here, you’ll find a curated list of key datasets.
The accompanying manuscript provides practical advice on accessing and using these resources to enhance your research. Whether you’re validating a hypothesis, exploring new analytical methods, or developing collaborative projects, we hope these data can advance your work without the high costs associated with data generation. Embrace the opportunity to innovate, discover, and contribute to kidney research in a way that’s efficient, equitable, and accessible to all.
This resource will be continually updated but please contact us if you have suggestions for new or missing resources.
| Registry name | Region | Transplant/ dialysis/ both | Adult/ paediatric/ both | Individual/ centre-based data | |
|---|---|---|---|---|---|
| 1 | Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) | Australia, New Zealand | Both | Both | Individual |
| 2 | Brunei Dialysis and Transplant Registry | Brunei | Both | Both | Centre for dialysis, Individual for transplant |
| 3 | Indian Society Of Pediatric Nephrology CKD Registry | India | Both | Paediatric | Individual |
| 4 | Indonesia Renal Registry | Indonesia | Both | Both | Centre |
| 5 | Japanese Society for Dialysis Therapy Renal Data Registry (JRDR) | Japan | Dialysis only | Both | Both |
| 6 | Korean Renal Data System | South Korea | Both | Both | Both |
| 7 | Renal Registry of Hong Kong | Hong Kong | Both | Both | Both |
| 8 | Singapore Renal Registry | Singapore | Both | Both | Individual |
| 9 | Taiwan Renal Data System (TWRDS) | Taiwan | Dialysis only | Adult | Both |
| 10 | Belgian Society of Nephrology (Dutch-Speaking) Renal registry (NBVN) | Flanders region, Belgium | Both | Both | Individual |
| Disease | Resource Name | Description | Link | |
|---|---|---|---|---|
| 1 | CKD | CRIC (Chronic Renal Insufficiency Cohort) | A study focused on understanding the progression of CKD and cardiovascular disease risk in patients with CKD. | https://repository.niddk.nih.gov/studies/cric/ |
| 2 | CKD | CKD-REIN Cohort | A French cohort studying CKD progression and management. | https://www.casd.eu/en/source/ckd-rein-study/ |
| 3 | CKD | The African American Study of Kidney Disease and Hypertension (AASK) | A study focused on hypertension and kidney disease progression in African Americans. | https://repository.niddk.nih.gov/studies/aask-trial/ |
| 4 | CKD | CKD.QLD (Chronic Kidney Disease Queensland) | An Australian registry studying CKD outcomes and progression. | https://cre-ckd.centre.uq.edu.au/research/ckdqld-registry |
| 5 | Lupus Family Registry and Repository (LFRR) | A lupus research resource for family-based genetic studies. | https://ordrcc.omrf.org/about-lupus-family-registry-and-repository/ | |
| 6 | Lupus Multiplex Registry and Repository (LMRR) | A repository supporting genetic studies of lupus in multiplex families. | https://www.niams.nih.gov/grants-funding/funded-research/registries/lupus-family-registry | |
| 7 | Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) Registry | A registry for longitudinal studies on lupus outcomes worldwide. | https://sliccgroup.org/ | |
| 8 | LUPUS | Euro-Lupus Cohort | A European cohort examining lupus disease characteristics and treatments. | https://lupus-europe.org/ |
| 9 | LUPUS | Lupus in Minorities: Nature vs. Nurture (LUMINA) Study | A study focusing on environmental and genetic factors in lupus among minorities. | https://pubmed.ncbi.nlm.nih.gov/34042054/ |
| 10 | LUPUS | Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) | A collaborative network studying lupus in Canadian populations. | https://www.lupuscanada.org/research/ |
| Biobank Name | Region | Description | Link | |
|---|---|---|---|---|
| 1 | The European Renal cDNA Bank (ERCB) | Europe | A collaborative network of nephrologists and researchers collecting renal biopsy samples for gene expression studies to understand kidney diseases. | https://www.ercb.org |
| 2 | The Swedish Renal Biobank (SRB) | Sweden | A national resource containing blood and urine samples from patients with various kidney diseases, aimed at facilitating research in nephrology. | https://www.lunduniversity.lu.se |
| 3 | The Irish Kidney Gene Project Biobank | Ireland | A biobank collecting blood, urine, and DNA samples from patients with chronic kidney disease for genetic and biomarker research. | https://www.beaumont.ie/kidneygeneproject |
| 4 | The UK Renal Registry (UKRR) Biobank | United Kingdom | Collects biological samples linked with extensive clinical data from patients undergoing renal replacement therapy to support research in kidney disease. | https://renal.org/audit-research/biobank |
| 5 | The United States Renal Data System (USRDS) Biobank | USA | Collects and stores biological samples from patients with end-stage renal disease to support epidemiological and clinical research in nephrology. | https://usrds.org |
| 6 | The Canadian Kidney Disease Research Network (CKDRN) Biobank | Canada | A repository of biological samples from patients with various kidney diseases, linked with clinical data, to support research in chronic kidney disease. | https://www.ckdrn.ca |
| 7 | The Dutch National Renal Biobank | Netherlands | Collects blood, urine, and tissue samples from patients with different stages of kidney disease to enable research in nephrology. | https://www.umcg.nl |
| 8 | Kidney Precision Medicine Project (KPMP) | USA | Collects kidney tissue biopsies to build a kidney atlas and support precision medicine research to better understand kidney disease at the molecular level. | https://kpmp.org |
| 9 | Australian Kidney Biobank | Australia | A national biobank storing blood, urine, and kidney tissue samples from individuals with kidney disease for research purposes. | https://kidney.org.au |
| Atlas Name | Description | Link | |
|---|---|---|---|
| 1 | Human Protein Atlas | A resource for studying the spatial distribution of proteins in human tissues, including kidney, using antibody-based proteomics. | https://www.proteinatlas.org |
| 2 | Genotype-Tissue Expression (GTEx) | A project to study gene expression and its relationship to genetic variation across different tissues, including kidney. | https://gtexportal.org |
| 3 | The Cancer Genome Atlas (TCGA) | A landmark cancer genomics project, providing data on genetic mutations and molecular characteristics of cancer, including kidney cancer. | https://www.cancer.gov/tcga |
| 4 | Human Cell Atlas | A global effort to map every type of cell in the human body, with kidney cell types included. | https://www.humancellatlas.org |
| 5 | Human BioMolecular Atlas Program (HuBMAP) | An effort to create a comprehensive map of the human body at the tissue and cellular levels, including kidneys, using advanced biomolecular techniques. | https://hubmapconsortium.org |
| 6 | Path resources for AI training | A variety of publicly available datasets and annotated images for training AI algorithms in pathology, including kidney tissue images. | https://www.kaggle.com/c/hubmap-kidney-segmentation |
| Resource Name | Description | URL | |
|---|---|---|---|
| 1 | (Re)Building a Kidney (RBK) | A comprehensive portal offering single-cell data and metadata linked to the GEO repository. | https://www.atlas-d2k.org/rebuildingakidney/ |
| 2 | Broad Institute single cell portal | Contains data on kidneys and organoids with visualization tools. | https://singlecell.broadinstitute.org/single_cell |
| 3 | CellxGene | Hosts 1000+ datasets across multiple organs, with some renal datasets available. | https://cellxgene.cziscience.com/collections |
| 4 | Human Biomolecular Atlas Program (HuBMAP) | Portal under development with a focus on kidney data. | https://portal.hubmapconsortium.org/ |
| 5 | Human Cell Atlas | Developing resource with approximately 30 high-quality kidney datasets available. | https://data.humancellatlas.org/hca-bio-networks/kidney |
| 6 | Humphries Lab – Kidney Interactive Transcriptome | Lists 23 single-cell RNA-Seq datasets with browser-based data visualization. | https://humphreyslab.com/SingleCell/ |
| 7 | Kidney Medicine Precision Project | A repository featuring data from 281 CKD and 125 reference participants. | https://atlas.kpmp.org/ |
| 8 | Nephroseq | A database that integrates genomic and transcriptomic data specifically for kidney disease research | https://www.nephroseq.org |
| 9 | RUUO Atlas | A single dataset with analytics tools for kidney research. | http://www.ruuo-kidney-gene-atlas.com/ |
| 10 | A comprehensive Single Cell Atlas of the Human Kidney | Cell Atlas containing multiple experiments and sources | https://www.kidneycellatlas.org/ |
| TYPE | Project | Description | Weblink | |
|---|---|---|---|---|
| 1 | Germline | UK Biobank (UKBB) | Large-scale biomedical database and research resource. | https://www.ukbiobank.ac.uk/ |
| 2 | Germline | Genomics England | National effort to sequence 100,000 genomes. | https://www.genomicsengland.co.uk/ |
| 3 | Germline | FinnGen | Finnish public-private partnership for genomic research. | https://www.finngen.fi/en |
| 4 | Germline | AllOfUs | US-based research program gathering health data. | https://allofus.nih.gov/ |
| 5 | Germline | VA Million Veteran Program | Research program analyzing genetic information from US veterans. | https://www.research.va.gov/mvp/ |
| 6 | Germline | deCODE Genetics | Iceland-based project analyzing the human genome. | https://www.decode.com/ |
| 7 | Normal Variation | gnomAD | Database aggregating and harmonizing exome and genome sequencing data from a variety of large-scale sequencing projects to provide insight into human genetic diversity. | https://gnomad.broadinstitute.org/ |
| 8 | Normal Variation | TOPMed | Part of the NIH, focusing on deeply phenotyped cohorts to study genetic contributions to a variety of diseases, particularly heart, lung, blood, and sleep disorders. | https://topmed.nhlbi.nih.gov/ |
| 9 | Disease cohort | Columbia University | Projects focusing on a wide variety of genetics research, including kidney diseases and beyond. | Columbia University |
| 10 | Disease cohort | BCH/Harvard Hidebrandt & Sampson Labs | Specialized in nephrology and kidney diseases, including genetics and genomic projects for understanding these conditions. | https://www.sampsonlab.org/ |
| Dataset Name | Description | Link | |
|---|---|---|---|
| 1 | HuBMAP Kidney Segmentation Challenge (Kaggle) | A Kaggle competition providing kidney tissue images and annotations for segmentation tasks. | https://www.kaggle.com/c/hubmap-kidney-segmentation |
| 2 | The Cancer Imaging Archive (TCIA) - Renal Cell Carcinoma Collection | A dataset containing kidney cancer (renal cell carcinoma) imaging and clinical data for AI research. | https://www.cancerimagingarchive.net |
| 3 | NephroPath Kidney Biopsy Dataset | A publicly available pathology dataset containing labeled kidney biopsy images for deep learning model training. | https://github.com/NephroPath |
| 4 | Panoptic Kidney Data (Harvard DBMI) | An open-source dataset providing annotated kidney histopathology images with both pixel-level and object-level segmentation labels. | https://dbmi.hms.harvard.edu |
| 5 | Atlas of Renal Pathology - Annotated Datasets | A resource for AI training, containing annotated kidney pathology slides for various renal diseases. | https://www.kidneypathologyatlas.org |