Kitty Jager

& Anneke Kramer, Jane Tizard, Enrico Verrina, Vianda Stel and Karlijn van Stralen

On behalf of he ERA-EDTA and ESPN Registry Committees

ERA-EDTA Registry, Dept. Medical InformaticsAcademic Medical Center, Amsterdam

42nd Annual meeting ESPN, Lyon –France11-14 September 2008

Paediatric Registry of CRI: an ESPN and ERA-EDTA common effort

Paediatric data in the ERA-EDTA Registry

• Adult renal registries

• Limited number of registries affiliated with the ERA-EDTA Registry include paediatric data

• High quality data

BUT

• Simple, i.e. only little detail and lacking data specifically important for children

Paediatric data in the ERA-EDTA Registry van der Heijden et al. 2004

Paediatric data in the ERA-EDTA Registry van der Heijden et al. 2004

Kramer A et al. Characteristics and Survival of Young Adults who started Renal Replacement Therapy during Childhood. NDT in press

Aim To describe patient characteristics and determine the risk factors for mortality of young adults who started RRT in childhood.

Methods Young adults in 9 renal registries who had started RRT during childhoodand turned 18 years between 1985 and 2004

18th birthdayStart of RRT

Young adults who started RRT during childhood

Paediatric data in the ERA-EDTA Registry Kramer et al. in press

Paediatric dataYoung adults who started RRT during childhood

Kramer A et al. Characteristics and Survival of Young Adults who started Renal Replacement Therapy during Childhood. NDT in press

Results

N = 1777

Young adults on RRT added 1.5% to

the number of incident adult patients

entering adult RRT services per year0

20

40

60

80

100

120

1985 1990 1995 2000 2005Y

ou

ng

ad

ult

s r

ea

ch

ing

ag

e 1

8 (

Pm

arp

)

All Series6

0 - 4 5 - 9

10 - 14 15 - 17

Young adults on RRT

Trend in PRD Young adults who started RRT during childhood

0

5

10

15

20

25

30

35

401985-1989 2000-2004

Treatment modality at the start of RRT Young adults who started RRT during childhood

0

10

20

30

40

50

60

70

80

90

1001985-1989 2000-2004

Patient Survival and Life Expectancy by treatment modality at 18th birthday

• Patient survival does NOT depend on PRD or on time on RRT before 18 yrs

• It does depend on treatment modality at 18th birthday

18 38 58 78

dialysis

transplant

general population

38 yrs

63 yrs

80 yrs

yrs

Life

Expectancy

Paediatric data in the ERA-EDTA RegistryWork in progress

1. ‘The effect of timing of renal transplantation on survival of children starting renal replacement therapy’

BackgroundFormer studies on transplant survival only included patients who

actually received a kidney transplant and therefore could only examine the survival after transplantation

Aim To estimate the effect of timing of the first renal transplantation on

patient survival taking into account the survival on dialysis before transplantation

2. Dialysis outcomes among pediatric patients by dialysis modality

With USRDS, CORR and ANZDATA

ESRD in children and young adultsThe need for a common effort

• Rare disease (EC definition – prevalence < 500 pmp)

– To perform studies of sufficient sample size a strong collaborative research network is needed

• To increase comparability of data and to perform collaborative studies

– Selection and standardization of data collection is needed

QUality European STudies

… aiming at the improvement of the quality of ESRD care ...

NephroQUEST

• Selection and standardization of clinical performance indicators• Automated data extraction• Development of new registries

The ERA-EDTA QUEST initiative

Collaborative studies

Anaemia

Cardiovascular risk

Bone-mineral

Dialysis adequacy

Selection and development of comparable

performance indicators

1. Selection based on relevance modifiable in guidelines feasibility of data collection

2. Prioritization

3. Standardization timing method of assessment units categories

Clinical ChairCardiovascular problems in ESRD Christoph WannerAnaemia Francesco LocatelliDialysis Adequacy Jeroen KoomanCa, P & Bone Jorge Cannata

MethodologicalElectronic data extraction Reinhard KramarCoding and Definitions Keith Simpson

Working GroupsWorking Groups66

Selection and development of comparable

performance indicators

→ ESPN database

A collaborative effort by ESPN and ERA-EDTA

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Thank you