Table 3.
Clinical Data Resources for PKD Research
| ARPKD | |
| Study or data resource | Type of study |
| ARegPKD (www.aregpkd.org) |
International longitudinal cohort study of patients with clinical diagnosis of ARPKD with a focus on Europe. |
| The Hepato/Renal Fibrocystic Diseases Translational Resource (www.arpkdb.org) |
Longitudinal cohort study of patients with ARPKD or other hepatorenal fibrocystic diseases (HRFD) with a focus on USA. |
| Renal RaDaR – ARPKD (https://rarerenal.renalreg.org/radar-registry/) |
Longitudinal cohort study by UK Kidney Association for patients with rare diseases - chapter on ARPKD. |
| ADPKD | |
| Study or data resource | Type of study |
| ADPedKD (www.adpedkd.org) |
International longitudinal cohort study of pediatric ADPKD patients. Subchapter covering Europe, Asia, Africa and South America, a subchapter covering UK, a subchapter covering North America, and a subchapter covering Australia. |
| AD(H)PKD (www.adpkd.org) |
The German ADPKD Tolvaptan Treatment Registry is a multicentric national cohort study of patients suffering from ADPKD that are considered for tolvaptan treatment. |
| ADPKD registry (https://connect.pkdcure.org/adpkd-registry/) |
National, online collection of patient-reported data in the United States, launched by the PKD Foundation. |
| Analysis of Clinical and Molecular Genetic Data Influencing the Evolution and Response to Therapy of ADPKD patients (GENKYST) (https://www.girci-go.org/reseaux/reseau-genkyst/) |
Genkyst is a multicentric regional longitudinal cohort study in the West of France. |
| ERKReg (www.erknet.org) |
International European longitudinal cohort study of patients with rare kidney diseases in Europe, including PKD. |
| Kansas PKD RTCC | Clinical and Translational Core | Early PKD Observational Cohort Study (EPOC) (https://www.kumc.edu/research/pkd-research-and-translation-core-center.html) |
Multicentric longitudinal cohort study in the United States for patients aged 4-35 y and eGFR >80 mL/min/1.73 m2. |
| Maryland PKD RTCC | Clinical and Translational Core | Adult ADPKD Cohort https://www.baltimorepkdcenter.org/ |
Longitudinal cohort study in the United States for adult ADPKD patients without kidney failure and eGFR>15 ml/min/1.73m2 |
| UAB PKD RTCC | Clinical and Translational Core | ADPedKD-US Cohort | Pediatric ADPKD (https://adpedkd-us.org/) |
Longitudinal cohort study of patients (< 18 years of age) with ADPKD. US node of ADPedKD international database. |
| Renal RaDaR – ADPKD (https://rarerenal.renalreg.org/radar-registry/) |
National longitudinal cohort study by UK Kidney Association for patients with rare diseases - chapter on ADPKD; includes UK node of ADPedKD international database. |
| Multiple studies | Data obtained for specific therapeutic approaches, specific diagnostic approaches or specific biosample collections. |
| Data and samples obtained during interventional clinical trials. | |
Abbreviations: ADPKD, autosomal dominant polycystic kidney disease; ARPKD, autosomal recessive polycystic kidney disease; eGFR, estimated glomerular filtration rate; HRFD, hepatorenal fibrocystic disease; PKD, polycystic kidney disease.