An invitation to participate in an international registry to study daily and nocturnal hemodialysis
The use of daily (quotidian) hemodialysis is rapidly increasing as growing evidence points to significant improvements in cardiovascular, metabolic, and nutritional parameters as well as quality of life in patients treated with these regimens. Recently, the Frequent Dialysis Regimens Workgroup of the Lawson Health Research Institute (LHRI) in London, Ontario, Canada, recommended an International Registry as an important next step in establishing the future role of quotidian dialysis regimens. This initiative is endorsed by the U.S. National Institutes of Health (NIH), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the International Society for Hemodialysis (ISHD). The specific goals of the Registry are to:
- evaluate a spectrum of outcomes both before and after switching from conventional thrice-weekly hemodialysis (CHD) to quotidian dialysis;
- conduct a matched-cohort study using CHD patients registered in the United States Renal Data System (USRDS) and the Canadian Organ Replacement Register (CORR) as control subjects;
- obtain data describing quotidian dialysis practices and associated outcomes to assist in the development of new technologies and create practice standards.
The LHRI is to serve as the coordinating centre for the Registry. An online data-entry and reporting system has been created and is now open for use. This highly secure online application complies with the U.S. Health Insurance Portability and Accountability Act and the Canadian Personal Information Protection and Electronic Documents Act. A Memorandum of Understanding between the NIDDK and LHRI has been signed, and will allow for USRDS and Registry data to be shared for the purposes of generating descriptive and analytical reports. An International Steering Committee will soon facilitate implementation of the Registry on an international-scale.
Participating centres will be invited to enter baseline patient data and semi-annual updates on the secure web-site. Prospective data will be collected on both prevalent and incident patients. In addition to demographic, comorbidity and biochemical data, centres will be asked to report endpoints such as hospitalization, death, modality change, and vascular access problems. This data-gathering and entry will be voluntary with no financial remuneration, thus every effort has been made to streamline the data-entry process so that it will be time-efficient and user-friendly. Data fields have also been kept to a minimum and request only readily-available patient data to maximize convenience for participants. Participating centres will be required to obtain approval from their local Institutional Review Boards and patient informed consent; the coordinating centre can provide templates to facilitate this process.
All participating centres will have access to their own patient- and centre-specific data, as well as pooled-data reports. Data reports will be generated every 6 months. Any centres prescribing dialysis regimens with a frequency of five or more treatments per week are welcome to enroll and can obtain further information by sending a request by e-mail to info@quotidiandialysis.org or fax 519-685-8395. We look forward to your participation in this important collaborative research initiative.
Visit the International Quotidian Database Registry website.
Sincerely,
Robert M. Lindsay, MD, FRCPC, FRCPE, FACP,
Gihad Nesrallah, MD, FRCPC, FACP,
and the Frequent Dialysis Regimens Workgroup
The University of Western Ontario,
London Health Sciences Centre
London, Ontario, Canada