1. 1 Organisation and Practice of a Kidney Biopsy Register Firenze, 07 September 2009 Cataldo Abaterusso MD, PhD Division of Nephrology University of Verona (Italy) The Italian View

2. 2 History of Italian Registry of Renal Biopsies (IRRB) Start in 1987 Two Surveys published 1987-1993 (Schena FP. Nephrol Dial Transplant 1997) 1996-2000 (Gesualdo L et al. Kidney Int 2004) PeriodsN. Renal UnitsN. Biopsies (native kidneys) 1987-19937413.835 1996-200012814.607

3. 3 http://88.59.234.153/irrb/

4. 4 IRRB 1996-2000 INDICATION TO PERFORM A RENAL BIOPSY: MAIN CLINICAL PICTURE n. Biopsies: 14607 Gesualdo L. Kidney Int 2004 % Biopsies

5. 5 DISTRIBUTION OF HISTOLOGIC GROUPS

6. 6 IRRB 1996-2000 MAIN PRIMARY GN IN NEPHROTIC SYNDROME Gesualdo L. Kidney Int 2004

7. 7 IRRB The Ending Story Since 2001 only 4321 renal biopsies collected 1987-199313.835 renal biopsies 1996-200014.607 renal biopsies

8. 8 Renal Biopsies Register The Philosphy of Building “You cannot have your cake and eat it” The Variables of Survival of a Renal Biopsies Register: –Development of Customer Loyalty –Unambiguous Data (Diagnosis, Definitions, etc.) –Wealth of Data –Time consuming –Updating / Maintenance of Register –Feedback –Having strongly motivated Collaborators

9. 9 Since 1998 started the “Renal Biopsies Register of TriVeneto” RTVBR collect renal biopsies from: Adult subjects Triveneto Area’s Renal Units Native kidneys Biopsies of graft not included RTVBR

10. 10 North-East of Italy: the Triveneto Area At data of 01 January 2008 Resident Population (age >15yrs) : 5.780.020 persons From ISTAT: http://demo.istat.it/pop2008/ 11.4% Italian Pop.

11. 11 YEARSCollaborative GroupN. Biopsies 199819344 199921343 200022320 200123336 200223316 200323293 200423326 200523332 200624394 200724335 200824362 Total3701

12. 12 Personal data Age Demographic Ethnicity Biopsy date Blood Pressure Clinical Presentation at Biopsy –(SN, AUA, ARF, CRF, etc) Main Treatment Laboratory s-Creatinine eGFR sHb Proteinuria (g/day) Hepatitis markers Complications of Biopsy Type of histologic analysis –(LM, IF, EM) Unequivocal Renal Diagnosis (from a multiple choice panel)

13. 13 Renal Biopsy and Histological Data RTVBR 1998-2008 Renal Diagnosis LM + IF more than 85% of biopsies ME about 50% of biopsies http://rtbr.sined.it

14. 14 Laboratory

15. 15 Clinical Presentation and Treatment

16. 16 On-line search into RTVBR

17. 17 Statistics

18. 18 Renal Biopsies Register The RTVBR Experience: The Variables of Survival of a Renal Biopsies Register: –Development of Customer Loyalty –Unambiguous Data (Diagnosis, Definitions, etc.) –Wealth of Data –Updating / Maintenance of Register –Time consuming –Feedback (annual report and meetings) –Having strongly motivated Collaborators

19. 19 Epidemiology of GN Variation of incidence on time Renal Biopsy Policy Identification and collection of rare and uncommon renal disease Database to perform Surveys/Trials on uncommon nephropathies Linkage with other Register (i.e Dialysis and Transplant Register) The Points of Strenght of a Renal Biopsies Register

20. 20 DISTRIBUTION OF HISTOLOGIC GROUPS RTVBR 1998-2007 RESULTS OF RTVBR ANALYSIS

21. 21 RTVBR 1998 - 2008 INDICATION TO PERFORM A RENAL BIOPSY: MAIN CLINICAL PICTURE N. Biopsies 3701

22. 22 RTBR 1998 – 2008 INDICATION TO RENAL BIOPSY PER GROUP OF AGE

23. 23 PRIMARY GLOMERULONEPHRITIS DIAGNOSIS% IgAN31 MGN25 FSGS15 Mes. not IgA11 MCD7 MPGN6 Crescentic GN (CGN)4 RTVBR 1998-2008

24. 24 RTVBR 1998 - 2007 PREVALENCE OF MAIN PRIMARY GLOMERULONEPHRITIS

25. 25 SECONDARY HISTOLOGIC PICTURES DIAGNOSIS% SLE20 DYSGAMMAGL.20 VASCULITIS19 DIABETES15 SHP5 CRYOGLOB.4 POST-INFECTIOUS4 RTVBR 1998-2008

26. 26 RTVBR 1998 - 2007 PREVALENCE OF MAIN SECONDARY HISTOLOGIC PICTURES

27. 27 RTBR 1998 - 2008 ACUTE RENAL FAILURE STRATIFIED FOR AGE N. Cases 485 M: 60% F: 40%

28. 28 RTBR 1998 - 2008 ACUTE RENAL FAILURE

29. 29 RTVBR 1998-2008 ACUTE RENAL FAILURE %

30. 30 RTBR 1998 - 2008 ACUTE RENAL FAILURE Main Histologic Diagnosis

31. 31 RTBR 1998-2008 NEPHROTIC SYNDROME N° Pts1462 Male (%)62 Female (%)38 Mean Age (yrs±SD) 52±5

32. 32 RTBR 1998 - 2008 NEPHROTIC SYNDROME N. 1462 biopsies

33. 33 RTVBR 1998-2008 NEPHROTIC SYNDROME Main Histologic Diagnosis %

34. 34 RTVBR 1998-2008 NEPHROTIC SYNDROME Class of Age (y) 21 - 4041 - 65> 65 MGN (%) 223440 FSGS14118 MCD1367 IgAN1263 SLE1041 MesGN854 MPGN646 Diabetes287 Dysgam.1811

35. 35 CONCLUSIONS The management and survival of a Renal Biopsy Register (RBR) are a compromise solution between multiple conditions Management demands and time consuming by Collaborators have to be lower than their advantages (feedback) RBR could facilitate the development of a network of Renal Units The RBR’s strenght is strictly linked to continuity of providing the data A RBR well managed could be an effective tool to perform trials and surveys