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:
All Kidney News - an overview of available peer
reviewed information on kidney disease. (added 9/15/09)
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 (link
updated on 2/3/2009)
End-stage Renal
Disease: Patient Satisfaction (link added on 8/18/2004)
International Society for Quality of Life Research
ISOQOL 16 to be held October 28-31, 2009 in New Orleans
Kidney MD (added
7/11/2005)
An educational site dedicated to keep you informed of kidney disease issues.
Life Options (added
11/14/2008; expanded on 2/3/2009; updated 5/12/2009)
A program of research, research-based education, and outreach to help people with kidney
disease.
Implemented a fee-based scoring tool for the KDQOL-36 http://www.kdqol-complete.org/ 5/11/2009.
MAPI Institute (added
3/10/2006; updated 11/14/2008)
Questionnaires and translations, etc...
MAPI Research Trust (added 11/14/2008)
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 -
(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.
Promoting
Excellence (added 11/14/2008)
Information on improving health care for dying people and their families.
End-of-life care..
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; updated on 11/14/2008; link corrected on 2/3/2009)
"facilitates the achievement of optimal wellness for renal disease patients"
The United States Renal Data System (USRDS)
(link corrected on 2/3/2009)
United Network for Organ Sharing (UNOS)