Please find useful links to organisations and research networks below.
ADPedKD is an international, longitudinal registry including autosomal dominant polycystic kidney disease (ADPKD) patients followed up from childhood.
It aims to provide an observational evidence base for unified diagnostic, follow-up and treatment approaches regarding modifiable disease factors such as hypertension in order to slow down disease progression.
ARegPKD is an international, longitudinal registry of autosomal recessive polycystic kidney disease (ARPKD) patients followed up from childhood.
It addresses the major open scientific and clinical issues and aims to contribute to the fight against this life-threatening disorder of early childhood.
The APDKD Registry is the the first North American database of patients with ADPKD, set up by the PKD Foundation. It is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD).
By joining the ADPKD Patient Registry, you will enable the PKD Foundation to understand more about the ADPKD patient journey, unmet medical needs, patient preferences and reveal more about the disease burden on patients' lives and their families. The Registry will also help identify patients suitable for research studies and trial.
European Reference Networks
ERKNet is the European Reference Network for Rare Kidney Diseases, a consortium of 38 expert pediatric and adult nephrology centers in 12 European countries providing healthcare to more than 40,000 patients with rare disorders of the kidneys.
ERKNet is dedicated to improve knowledge about rare kidney diseases among patients and healthcare professionals, disseminating best practice and clinical guidelines. It supports clinical research and offers virtual consultation services to physicians throughout Europe who need advice for challenging cases with a rare kidney disease.
ERN RARE-LIVER is the European Reference Network for centres of excellence in the clinical management of rare liver disease in adults and children, including congenital hepatic fibrosis in ARPKD and polycystic liver disease in ADPKD.
ERN RARE-Liver aims to improve the standards of care and clinical knowledge in rare liver diseases across Europe. Working closely with the clinical centres, doctors and patients the network will: disseminate best clinical practice, use innovative IT solutions to enable clinicians to access expert knowledge across Europe, update clinical guidelines to enable standardisation of care and to provide patients with relevant high quality information.
The Standardised Outcomes in Nephrology (SONG) is an independent and global initiative that brings together patients, family members, caregivers, and health professionals in partnership.
SONG aims to establish core outcome domains and outcome measures in chronic kidney disease (CKD), including polycystic kidney disease, for use in clinical trials and other forms of research.
Can-SOLVE CKD is a pan-Canadian patient-oriented kidney research network.
In partnership with patients, researchers, health care providers, and policy-makers, they are working to transform treatment and care for Canadians living with or at risk for chronic kidney disease.
Kidney Disease: Improving Global Outcomes (KDIGO) is the global nonprofit organization developing and implementing evidence-based clinical practice guidelines in kidney disease.
KDIGO guidelines translate the best worldwide scientific evidence into practical recommendations for clinicians and patients.
ERA-EDTA is an association of physicians with over 7000 members from Europe and the Mediterranean area.
Its objective is the advancement of medical science and of clinical work in nephrology, dialysis, renal transplantation, hypertension and related subjects. ERA-EDTA provide up-to-date knowledge, exclusively based on scientific data, independent from governments’ policies and from any influence of the industry.