KDQOL Working Group Publications
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Related links and other information
Here are some links related to research on kidney disease, the KDQOL
mission and projects, and our sponsors:
Amgen
Assist Technologies 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 - Volume
V, Issue 1 - October 2003.
End-stage Renal
Disease: Patient Satisfaction (link added on 8/18/2004)
HDO, Inc. - Health Data Organizers
HDO, Inc. offers automated versions of the KDQOL™,
KDQOL-SF™, and the SF-36. HDO, Inc. is also offering the automated instruments
in French, German, Italian, and Spanish. HDO, Inc., furnishes your center with
copies of the automated instrument, which is completed by the patient and returned to HDO,
Inc. This service eliminates the need for data entry and ensures a consistent and
accurate method of data collection with fast turnaround. Additionally, risk and
demographic databases can be created and linked to the quality of life data.
HDO, Inc., has developed software that permits
data entry 1) by viewing the KDQOL-SF form and clicking on the response to each question
or 2) via a spreadsheet. Fees are based on population size, duration of study,
testing frequency, statistical analysis requested, and database design. For more
information please contact HDO at hdo@mindspring.com .
International Society for Quality of Life Research
ISOQOL 2003 to be held November 12-15, 2003, Prague, Czech Republic.
MAPI Research Institute
(added 3/10/2006)
List of questionnaires and translations.
Kidney MD (added
7/11/2005)
An educational site dedicated to keep you informed of kidney disease issues.
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 -
(link added on 9/17/2007)
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.
Nephrology Social Work Archive
A collaborative archive for renal social work professionals, Nephrology
Social Work Archive makes available many documents and links useful to practitioners of
Medical Social Work and other professionals.
Proqolid
Patient-reported outcome and quality of life instruments database.
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 - (link added on 8/18/2004)
"facilitates the achievement of optimal wellness for renal disease patients"
The United States Renal Data System
(USRDS)
United Network for Organ Sharing (UNOS)