40th Annual Meeting of the European Society for Pediatric Nephrology Palermo, October 710, 2006

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40th Annual Meeting of the European Society for
Pediatric NephrologyPalermo, October 7-10, 2006
Symposium 6 Collaboration is the key Chairmen
Matthias Brandis and Mark Taylor
Lessons from the Italian Pediatric Dialysis
Registry Enrico Verrina
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
Key dates

• Establishment of a PD Pediatric Registry
• patient ? 15 years of age at the start of first
• course of chronic dialysis

1986
1989
Inclusion of HD patients
2000
Age of patients enrolment extended to 18 years
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DATA COLLECTION (I)

• with
  demographic data at the time the patient enters
  his first course of chronic dialysis
• every
  6 months,
• and in case of - dialysis-related complications
• - treatment modality change
• - transplantation, or death

REGISTRATION FORM
PATIENT FILE UPDATE
dynamic history of patients treatment
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DATA COLLECTION (II)

• Central database with paper returns

1986
Central database with unit based satellite
databases and electronic returns
2000
Establishment of an internet linkage
allowing direct remote data entry ? data
validation at the time of entry ? central
database always up-to-date for analysis ?
local interrogation of centres own data, and of
general data when special studies are planned.
2004
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ORGANIZATION OF THE REGISTRY

• Annual assembly of
• participating centres

• Evaluate and discuss collected data and their
  elaboration
• Plan specific studies on selected issues
• Decide data presentation and publication

Scientific Committee
Coordinating Centre
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
Database of epidemiological and clinical
information
Network to perform specific studies
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ITALIAN PEDIATRIC DIALYSIS REGISTRY

• REPORT OF EPIDEMIOLOGICAL AND CLINICAL DATA
• (yearly updated)

available on the web-site of the ITALIAN SOCIETY
OF PEDIATRIC NEPHROLOGY
www.sinp.org/ita
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Major topics
ITALIAN PEDIATRIC DIALYSIS REGISTRY
Special studies
Epidemiology and clinics

• patient and technique survival on CPD and HD
• peritonitis
• peritoneal catheters
• patient hospitalisation
• infants on chronic dialysis
• dialysis prescription
• concomitant drug therapy

• nutritional status
• middle molecule and small protein removal
• carnitine supplementation
• pharmacokinetics of rhEPO
• sclerosing encapsulating peritonitis

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ITALIAN PEDIATRIC DIALYSIS REGISTRY
New patients starting CPD/HD per year at an age ?
15 years(1989 - 2005 period)
1992
1993
2005
1989
1990
1991
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
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ITALIAN PEDIATRIC DIALYSIS REGISTRY

• A multicenter experience on patient and
  technique survival in children on chronic
  dialysis
• Pediatr Nephrol 2004 19 82-90

New patients on CPD/HD (years 1989-2002)
no previous renal replacement therapy
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
PATIENT DISTRIBUTION ACCORDING TO AGE AT
DIALYSIS INITIATION
0 - 1
2 - 3
3 - 4
4 - 5
1 - 2
14 - 15
6 - 7
7 - 8
8 - 9
9 - 10
10 - 11
5 - 6
11 - 12
12 - 13
13 - 14
15 - 16
Years
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
Patient survivalaccording to age at start of RRT

plt0.0001
Months
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
Technique survival according to age at start of
RRT

p0.007
Months
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Causes of technique failure(years 1989-2002)
ITALIAN PEDIATRIC DIALYSIS REGISTRY
CPD (347 patients)
HD (185 patients)
Peritonitis and/or exit-site infection
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
INCIDENCE OF PERITONITISDURING FOUR OBSERVATION
PERIODS
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Peritonitis rate by age and catheter
characteristics
ITALIAN PEDIATRIC DIALYSIS REGISTRY
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
PERITONITIS - FREE CATHETER SURVIVAL
RATEACCORDING TO PATIENT AGE AT CATHETER
INSERTION
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
PERITONITIS - FREE CATHETER SURVIVAL
RATEACCORDING TO EXIT SITE ORIENTATION

p lt 0.05
UP 18 14 10
6 4 3
2 1 DOWN 88
61 48 33
21 15 10
8 LATERAL 51 39 29
23 17 9
7 6
CPD months
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Patient hospitalisation rate (days
dialysis-month)
ITALIAN PEDIATRIC DIALYSIS REGISTRY
Statistically significant difference 1 Gr. A
vs Gr. B 2 Gr. A vs Gr. C

3 Gr. B vs Gr. C
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SCLEROSING ENCAPSULATING PERITONITIS(SEP)
ITALIAN PEDIATRIC DIALYSIS REGISTRY

• rare, but extremely serious complication of
  chronic peritoneal dialysis (CPD)
• associated with
• ? prolonged course of CPD
• ? recurrent and/or particularly severe
  peritonitis
• ? high glucose dialysis solutions
• incidence in Japanese CPD children 2
• (Hoshii S, Honda M. Perit Dial Int 2002)

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ITALIAN PEDIATRIC DIALYSIS REGISTRY
SCLEROSING ENCAPSULATING PERITONITIS
2 CPD courses
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INCIDENCE OF SEP ACCORDING TO PRIMARY RENAL
DISEASE
ITALIAN PEDIATRIC DIALYSIS REGISTRY
8.8
1.1
p lt 0.01
Focal segmental glomerulosclerosis (57 patients)
Others (470 patients)
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PROPOSAL
Peritoneal Dialysis International, September
2006, vol.26, pp.559-563

• AN INTERNATIONAL ENCAPSULATING PERITONEAL
  SCLEROSIS REGISTRY AND DNA BANK WHY WE NEED ONE
  NOW

United Kingdom EPS Advisory Group
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ITALIAN PEDIATRIC DIALYSIS REGISTRY
A prospective multicentre study of the
nutritional status in children on chronic
peritoneal dialysis Edefonti A, et al. Nephrol
Dial Transplant 2006 21 1946-51.

• Anthropometric Bioimpedance Nutrition score
• - height - reactance
• - weight - phase angle
• - BMI - distance
• - MAMC, AMA, AFA

ABN score varies from 3 (worst) to 15
(best) 10.33 ? 3rd percentile limit of
normality
based on 264 healthy children of different ages
(PDI 2002 22 602-7)
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Comparison of patients with malnutrition (ABN
score lt 10.33) and patients with a normal
nutritional status (ABN score ? 10.33) by
demographic and treatment variables
ITALIAN PEDIATRIC DIALYSIS REGISTRY
A. Edefonti, et al. NDT 2006
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Comparison of patients with malnutrition (ABN
score lt 10.33) and patients with a normal
nutritional status (ABN score ? 10.33) by
biochemical markers
ITALIAN PEDIATRIC DIALYSIS REGISTRY
A. Edefonti, et al. NDT 2006
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Comparison of patients with malnutrition (ABN
score lt 10.33) and patients with a normal
nutritional status (ABN score ? 10.33) by indices
of dialytic clearance, residual renal function,
and dietary energy and protein intake
ITALIAN PEDIATRIC DIALYSIS REGISTRY
A. Edefonti, et al. NDT 2006
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Collaboration with other ESRF registries
ITALIAN PEDIATRIC DIALYSIS REGISTRY

• RIDT ITALIAN REGISTRY OF DIALYSIS AND
  TRANSPLANTATION (adult patients)
• CNT ITALIAN TRANSPLANT CENTRE
• of the National Public Health Service
• (adult and pediatric patients)
• PAEDIATRIC ERA-EDTA REGISTRY

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ERA-EDTA Paediatric data as of August2005
4280 new patients
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Paediatric RRT

• ERA-EDTA Registry, AMC Amsterdam
• Dr J. Tizard, Dr. E. Verrina, Dr. M. Lewis, Dr.
  B.J.van der Heijden

On behalf of the ERA-EDTA Registry Committee With
many thanks to all nephrologists, nurses, other
staff and patients in the renal centres XLI
ERA-EDTA Congress, Lisbon, 2004
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Paediatric Units Italy UK
Milan
Padova
Turin
Parma
Genoa
Glasgow
Ancona
Florence
Newcastle
Belfast
Rome
Bari
Leeds
Liverpool
Naples
Nottingham
Manchester
Birmingham
Cagliari
Cardiff
Palermo
London 2x
Messina
Bristol
Southampton
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Conclusions(1)

• Italy and the UK have
• similar dialysis populations
• similar aetiology of ESRF
• similar PD survival
• similar causes of death
• UK has increased time to transplant

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Common denominators of data collection
JOINT ANALYSIS OF PEDIATRIC DATA FROM UK AND ITALY

• UK ITALY
• Date of birth
• Gender
• Primary renal disease
• Date at start RRT
• Associated non renal diseases
• Start modality type
• Type of access
• HD session / wk
• Weight
• Height
• Blood pressure
• GFR
• Hb
• EPO use
• Growth hormone use
• Modality type change
• Date of change
• Reason of technique failure

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QUEST

• QUality European STudies

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QUEST

• Aiming at improvement of quality of ESRD care by
• Providing methods to evaluate (and improve) the
  quality of care provided to RRT patients
• select / develop comparable indicators based
  on EBPG and
• other practice guidelines
• develop information technology for data
  collection for use by
• national / regional registries
• develop collaborative research projects in
  different areas
• Constructing an European and local clinical
  databases serving as a basis for continuous
  quality improvement programmes
• develop database for use at central level /
  adjust those at local
• level

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PRESENT AND FUTURE
ITALIAN PEDIATRIC DIALYSIS REGISTRY

• Improve the efficiency of the registry database
  to collect, elaborate and transfer data
• Provide each participant with an exhaustive
  feed-back of information
• Encourage special studies on issues that need to
  be addressed on a multicenter basis
• Further international cooperation as the natural
  evolution of national activity