The Belgian Virtual Tumourbank

Transcription

1 The Belgian Virtual Tumurbank In practice Céline Degaillier BVT Inauguratin sympsium 04/10/2012

2 Overview Frm thery t practice: A netwrk f cllabratins Belgian Cancer Plan and the virtual tumurbank Legal aspects Harmnizatin with existing structures BVT applicatins: BVTr & BVTc Lading the data in the catalgue Registratin mdule The catalgue What steps t take? Pssibilities Sample exchange tl Perspectives

3 A netwrk f cllabratins 11 lcal bibanks/tumurbanks (TB) Cnservatin and management f the samples (and assciated data) Bibank Manager: daily crdinatin Bibank Crdinatr (medical dctr) as legal representative Steering Cmmittee f the Belgian Virtual Tumurbank (BVT) Strategic decisins Meetings 2-3x/year Belgian Cancer Registry (BCR) Cllects data frm cancer diagnses f Belgian residents Belgian Virtual Tumurbank: daily crdinatin f the prject (datamanagement, harmnizatin and standardizatin, helpdesk, prepare plicies and prcedures, website, rganize meetings, )

4 A netwrk f cllabratins Other bibank initiatives (CMI, Bibanque wallnne BBMRI, etc) Other disease-based, nn-tumur bibanks Tumurbanks Representative nclgists Bibank crdinatrs Bibank managers BIOBANK MANAGERS WORKING GROUP Belgian Ministry f Health STEERING COMMITTEE OF THE BVT Belgian Cancer Center Belgian Cancer Registry Privacy Cmmissin

5 Frm thery t practice: BVT applicatins Créer une tumrthèque virtuelle inter-universitaire Créer une tumrthèque virtuelle inter-universitaire 5

6 Frm thery t practice: BVT applicatins Créer une tumrthèque virtuelle inter-universitaire = Samples remain lcally in the tumurbanks and the assciated data is submitted fr centralizatin Request sample Lcal tumurbanks Centralizatin f the data Hw? Central database at BCR View data Lcate sample Hw? Researcher Request sample

7 Frm thery t practice: Legal aspects Prcessing f (medical) persnal data requires the authrizatin frm the Privacy Cmmissin Use f medical persnal data fr the creatin f the catalgue Access cntrl t the catalgue f the BVT Use f the natinal registry number fr the BVT-prject Unequivcally identify dnrs amng the different hspitals Allw quality cntrl f the sample data linkage with the cancer diagnses

8 Harmnizatin with TB data and ITsystems Every tumurbank has its wn lcal sftware applicatin t manage the samples Every tumurbank has its wn lcal dataset => The harmnizatin has t ccur n the level f the centralizatin, by use f structured files fr datatransfer

9 Other requirements fr the BVT applicatins Respect the privacy f the dnrs: Highly secured: ehealth services, adapted infrastructure Annymised data fr the researcher Cntrlled replicatin f the submitted data t the catalgue But: return t the dnr s identity must remain pssible Quality Cntrl Additinal assciated data if needed, after authrizatin Change f cnsent Return f relevant accidental findings

10 BVT nline applicatins BVTr(egistratin) BVTc(atalgue) = Registratin mdule f the BVT Fr lcal TB and BCR Input data = Catalgue mdule f the BVT Fr researcher View samples Secured by Live since beginning f 2012!

11 BVTr & BVTc External Cancer diagnses BVTr (registratin) Pssible linkage QC Add ctnm BVTc (catalgue) central Data validatin Cntrlled replicatin Remve identifying parameters catalgue Update Submit data Query lcal lcal lcal... lcal Lcal tumurbanks Cntact lcal TB BCR Request access Researcher

12 BVTr Registratin mdule

13 Frm thery t practice: Lading data in the catalgue 2010: Elabratin f a minimal dataset, with well-defined variables Data frm samples befre 2010 BCR supprts the frmatting f data cnfrm the dataset Data frm samples after 2010 Lcal tumurbanks frmat their wn data cnfrm the dataset If needed, assistance is given by BCR

14 Lcal TB Uplad f strictly frmatted batch files t the central database

15 Individual input f data pssible

16 Mdificatins t laded samples are always pssible

17 BCR Data validatin: publish r reject

18 Access lcal TBs t register their samples Access researchers t view samples in the catalgue

19 BVTc Catalgue mdule

20 The researcher? 1. Cnsult the BVT website fr mre infrmatin 2. Request access t catalgue 6. Start lcal exchange prcedure 3. Receive access with authrizatin f the BVT Steering Cmmittee 4. Cnsult the catalgue: view the samples crrespnding t yur criteria 5. Recrd the tumurbanks that have the selected samples At this mment: mre than 12,000 registratins searchable in the catalgue!

21 Catalgue Hme page = simple search

22 Select the lesin type

23 Select the lesin type Select an rgan (categry)

24 View the available samples N need t knw the cdes Refine yur search

25 in the Advanced search page Include patient criteria Include sample criteria

26 Specify the mrphlgy f the tumur

27 Specify the mrphlgy f the tumur Include pathlgical T-staging

28 View the resulting selectin Extend view r exprt data t allw lcalizatin

29 Sample exchange tl Upgrade f the BVTc applicatin 4. Cnsult the catalgue: view the samples crrespnding t yur criteria 8. Start lcal exchange prcedure with specific samples and with predictable utcme 5. Recrd which tumurbanks have the samples 7. Lcal TBs make judgement n request 5. Send yur sample request in the applicatin 6. BVTc applicatin sends yur request t the lcal TBs

30 Sample exchange tl Researcher selects samples and sends the request

31 Sample exchange tl The lcal tumurbanks send back their decisin Nt accepted Start lcal exchange prcedure at the cncerned tumurbanks with specific samples and with predictable utcme

32 Perspectives Finalize the Sample exchange tl Increase quality and standardizatin f data and samples Lcal TB: Twards ISO accreditatin fr all tumurbanks? Data and samples Implement SOPs and quality assurance BCR: increase Quality Cntrl Cmparisn with the cancer diagnses in BCR registry Increase feedback t lcal tumurbanks Lcal TB: cntinue input f data in the catalgue BCR: cntinue crdinatin and supprt fr the prject Increase natinal and internatinal cllabratin

33 Thank yu fr yur attentin Bibank team at the Belgian Cancer Registry Céline Degaillier and Eva Van der Stck Acknwledgement t Dr. Jimmy Van den Eynden