Resources

Related Information

Research on kidney disease, the KDQOL mission, and more

• Amgen
• assisTek  touchscreen technology for administering the KDQOL in clinical trials.
• DaVita, Inc. - provider of dialysis services and support.   Helping people with chronic kidney disease lead productive, fulfilling lives with dignity.
• DOPPS - The Dialysis Outcomes & Practice Patterns Study
• The DOPPS Report
• DOPPS Practice Monitor
• International Society for Quality of Life Research
• MAPI Institute - Questionnaires and translations, etc...
• MAPI Research Trust - Patient Reported Outcomes and Pharmaco-Epidemiology.
• National Centre for Health Outcomes Development (NCHOD)
  Devoted to patient-assessed health instruments.
  Includes a bibliographic resource comprising over 6000 abstracts relating to published reports of instrument evaluations.
• National Kidney Foundation (NKF)
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
• National Quality Forum - National Voluntary Consensus Standards for End Stage Renal Disease Care  
  This project seeks to achieve voluntary consensus on a set of performance measures that can be used to assess the quality of end stage renal disease (ESRD) care in the United States.
• UNOS | United Network for Organ Sharing | US Organ Transplantation
• Developed by Mapi Research Institute and managed by Mapi Research Trust (Lyon, France), PROQOLID aims to identify
  and describe PRO and QOL instruments to help you choose appropriate instruments and facilitate your access to them.
• The Renal Network
  "facilitates the achievement of optimal wellness for renal disease patients"
• The United States Renal Data System (USRDS)
• United Network for Organ Sharing (UNOS)