Renal replacement therapy for rare diseases affecting the kidney: An analysis of the ERA-EDTA Registry

Nephrology Dialysis Transplantation

Volumn 29, Issue , 2014, Pages iv1-iv8

  Wühl, Elke ^a   Van Stralen, Karlijn J ^b   Wanner, Christoph ^c   Ariceta, Gema ^d   Heaf, James Goya ^e   Bjerre, Anna K ^f   Palsson, Runolfur ^g,h   Duneau, Gabrielle ⁱ   Hoitsma, Andries J ^j   Ravani, Pietro ^k   Schaefer, Franz ^a   Jager, Kitty J ^b  

^a Center for Pediatrics and Adolescent Medicine   (Germany)

^b UNIVERSITY OF AMSTERDAM   (Netherlands)

^c UNIVERSITY OF WÜRZBURG   (Germany)

^d HOSPITAL MATERNO INFANTIL VALL D HEBRON   (Spain)

^e GENTOFTE UNIVERSITY HOSPITAL   (Denmark)

^f OSLO UNIVERSITY HOSPITAL   (Norway)

^g LANDSPITALI UNIVERSITY HOSPITAL   (Iceland)

^h UNIVERSITY OF ICELAND   (Iceland)

ⁱ BORDEAUX UNIVERSITY HOSPITAL   (France)

^j RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^k UNIVERSITY OF CALGARY   (Canada)

more..

Author keywords

Incidence; Orphan disease; Prevalence; Rare disease; Renal replacement therapy

Indexed keywords

ADULT; ARTICLE; CHILD; CONTROLLED STUDY; CYSTINOSIS; DISEASE CLASSIFICATION; END STAGE RENAL DISEASE; HEMOLYTIC UREMIC SYNDROME; HUMAN; INCIDENCE; KIDNEY DISEASE; KIDNEY FAILURE; MAJOR CLINICAL STUDY; MEDULLARY SPONGE KIDNEY; NEPHRONOPHTHISIS; OXALOSIS; PREVALENCE; PRIORITY JOURNAL; REGISTER; RENAL REPLACEMENT THERAPY; ADOLESCENT; AGED; CHRONIC KIDNEY FAILURE; EUROPE; FEMALE; INFANT; MALE; MIDDLE AGED; NEWBORN; ORPHAN DISEASE; PRESCHOOL CHILD; RARE DISEASE; STATISTICS; TIME; VERY ELDERLY; YOUNG ADULT;

INCIDENCE; ORPHAN DISEASE; PREVALENCE; RARE DISEASE; RENAL REPLACEMENT THERAPY;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; CHILD; CHILD, PRESCHOOL; EUROPE; FEMALE; HUMANS; INCIDENCE; INFANT; INFANT, NEWBORN; KIDNEY FAILURE, CHRONIC; MALE; MIDDLE AGED; PREVALENCE; RARE DISEASES; REGISTRIES; RENAL REPLACEMENT THERAPY; TIME FACTORS; YOUNG ADULT;

EID: 84910140857     PISSN: 09310509     EISSN: 14602385     Source Type: Journal    
DOI: 10.1093/ndt/gfu030     Document Type: Article

References (19)

1. European Commission - DG Health & Consumers. Rare Diseases. Legal Basis of EU Policy. http://ec.europa.eu/health/rare-diseases/policy/index-en.htm (2 December 2013)
2. Orphanet Report Series. Prevalence of Rare Diseases: Bibliographic Data 2013. http://orpha/net/orphacom/cahiers/docs/GB/Prevalence-of-rare-diseases-by-alphabetical-list.pdf (updated June 2013; cited Number 1)
3. ERA-EDTA Registry. ERA-EDTA Registry Annual Report 2011, 2013. ISBN 978-90-817480-3-2
4. Orphanet Report Series. List of Rare Diseases and Synonyms Listed in Alphabetical Number, 2013. http://www.orpha.net/orphacom/cahiers/docs/GB/list-of-rare-diseases-in-alphabetical-order.pdf
5. Harambat J, van Stralen KJ, Espinosa L et al. Characteristics and outcomes of children with primary oxalosis requiring renal replacement therapy. Clin J Am Soc Nephrol 2012; 7: 458-465
6. Van Stralen KJ, Emma F, Jager KJ et al. Improvement in the renal prognosis in nephropathic cystinosis. Clin J Am Soc Nephrol 2011; 6: 2485-2491
7. Eng CM, Fletcher J, Wilcox WR et al. Fabry disease: baseline medical characteristics of a cohort of 1765 males and females in the Fabry Registry. J Inherit Metab Dis 2007; 30: 184-192
8. Thadhani R, Wolf M, West ML et al. Patients with Fabry disease on dialysis in the United States. Kidney Int 2002; 61: 249-255
9. Wuhl E, van Stralen KJ, Verrina E et al. Timing and outcome of renal replacement therapy in patients with congenital malformations of the kidney and urinary tract. Clin J Am Soc Nephrol 2013; 8: 67-74
10. Nissenson AR, Port FK. Outcome of end-stage renal disease in patients with rare causes of renal failure. I. Inherited and metabolic disorders. Q J Med 1989; 73: 1055-1062
11. Port FK, Nissenson AR. Outcome of end-stage renal disease in patients with rare causes of renal failure. II. Renal or systemic neoplasms. Q J Med 1989; 73: 1161-1165
12. Nissenson AR, Port FK. Outcome of end-stage renal disease in patients with rare causes of renal failure. III. Systemic/vascular disorders. Q J Med 1990; 74: 63-74
13. Lewis MA, Shaw J, Sinha M et al. UK Renal Registry 11th Annual Report (December 2008): chapter 13 demography of the UK paediatric renal replacement therapy population. Nephron Clin Prac 2009; 111 (Suppl 1): c257-c267
14. Tsakiris D, Simpson HK, Jones EH et al. Report on management of renal failure in Europe, XXVI, 1995. Rare diseases in renal replacement therapy in the ERA-EDTA Registry. Nephrol Dial Transpl 1996; 11 (Suppl 7): 4-20
15. WHO. International Classification of Diseases (ICD). http://www.who.int/classifications/icd10/
16. Venkat-Raman G, Tomson CR, Gao Y et al. New primary renal diagnosis codes for the ERA-EDTA. Nephrol Dial Transpl 2012; 27: 4414-4419
17. ERA-EDTA Registry. ERA-EDTA PRD Coding System. http://www.eraedta-reg.org/prd.jsp (2 December 2013)
18. WHO. International Classification of Diseases (ICD). http://www.who.int/classifications/icd11 (2 December 2013)
19. van Dijk PC, Jager KJ, de Charro F et al. Renal replacement therapy in Europe: the results of a collaborative effort by the ERA-EDTA registry and six national or regional registries. Nephrol Dial Transpl 2001; 16: 1120-1129