The Belgian Virtual Tumurbank In practice Céline Degaillier BVT Inauguratin sympsium 04/10/2012
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 5-10-2012 2
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, ) 5-10-2012 3
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 5-10-2012 4
Frm thery t practice: BVT applicatins Créer une tumrthèque virtuelle inter-universitaire Créer une tumrthèque virtuelle inter-universitaire 5
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 5-10-2012 6
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 5-10-2012 7
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 5-10-2012 8
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 5-10-2012 9
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! 5-10-2012 10
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 5-10-2012 11 Researcher
BVTr Registratin mdule 5-10-2012 12
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 5-10-2012 13
Lcal TB Uplad f strictly frmatted batch files t the central database 5-10-2012 14
Individual input f data pssible 5-10-2012 15
Mdificatins t laded samples are always pssible 5-10-2012 16
BCR Data validatin: publish r reject
Access lcal TBs t register their samples Access researchers t view samples in the catalgue
BVTc Catalgue mdule 5-10-2012 19
The researcher? 1. Cnsult the BVT website fr mre infrmatin www.virtualtumurbank.be 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! 5-10-2012 20
Catalgue Hme page = simple search 5-10-2012 21
Select the lesin type 5-10-2012 22
Select the lesin type Select an rgan (categry) 5-10-2012 23
View the available samples N need t knw the cdes Refine yur search
in the Advanced search page Include patient criteria Include sample criteria 5-10-2012 25
Specify the mrphlgy f the tumur 5-10-2012 26
Specify the mrphlgy f the tumur Include pathlgical T-staging 5-10-2012 27
View the resulting selectin Extend view r exprt data t allw lcalizatin 5-10-2012 28
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 5-10-2012 29
Sample exchange tl Researcher selects samples and sends the request 5-10-2012 30
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 5-10-2012 31
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 5-10-2012 32
Thank yu fr yur attentin Bibank team at the Belgian Cancer Registry Céline Degaillier and Eva Van der Stck bibank@registreducancer.rg www.virtualtumurbank.be Acknwledgement t Dr. Jimmy Van den Eynden 5-10-2012 33