Enterprise Europe Network Luxembourg IBBL – data protection in practice

Enterprise Europe Network
Enterprise Europe Network
Luxembourg
Conférence Protection des Données
May
2
5,
2
0
11
May 5, 0
09h00
IBBL
–
data protection in practice
IBBL
data protection in practice
The Integrated Biobank of Luxembourg (IBBL) is an independent, not-for-profit biobanking and biotechnology foundation
Dominic Allen, COO, IBBL
Damien Aps, CFO, IBBL

Introduction
•2008 – Grand Duchy created IBBL to support biomedical research in Personalized
Medicine and to work closely with the Lung Cancer Program and the newly created
Luxembourg Centre for Systems Biology
•IBBL’s mandate requires it to support a broad range of biomedical research projects
and develop research collaborations internationally
•
IBBL collected its first sample and data for a lung cancer study in 2009 but
IBBL collected its first sample and data
,
for a lung cancer study
,
in 2009
,
but
became fully operational only in mid 2010
•In the immediate future, the IBBL needs to be collecting tissues and associated
data to support research in four priority areas:
C
•
C
ancer
•Diabetes (T2)
•Parkinson’s disease
•A large population cohort
IBBL must ensure that its data protection policy and practice supports its strategy
The Integrated Biobank of Luxembourg (IBBL) is an independent, not-for-profit biobanking and biotechnology foundation
IBBL must ensure that its data protection policy and practice supports its strategy

Current Status - Specimens
•Collections
–Lung cancer – Two hospitals Luxembourg, one Belgium, one France
–Colon – One hospital Luxembourg
–Brain – One hospital Luxembourg (pending)
–Normal population – One hospital Luxembourg
–Blood samples for cardiovascular clinical trial – 31 EU sites
–Bladder cancer – Spanish National Cancer Research Center
•Types of Samples
–Tumour
–Blood/serum
–DNA/RNA
–Viable cells
IBBL is extending its collection program in Luxembourg and internationally

Current Status – Research &
Collaboration
•GBM clonality (TGen & Niclou – CRP-Santé)
•
MSRA
–
Develop SNPs for European strains (TGen & Even
–
LNS)
Collaboration
•
MSRA
Develop SNPs for European strains (TGen & Even
LNS)
•Lipid accumulating bacteria (TGen & Wilmes – CRP-GL & Uni.lu)
•Whole genome sequence of never-smoker (TGen & Betsou/De Witt – IBBL)
•Gene methylation in CML (TGen & Dieterich – Kirchberg) (pending)
Bladder cancer
biomarkers in urine (Domon
LCP)
•
Bladder cancer
–
biomarkers in urine (Domon
–
LCP)
•Pre-analytical metabolomics (Biobanque de Picardie, France)
•Tissue biospecimen research (Pathology group in Thionville, France)
•Tuberculosis biobankin
g,
p
ublication in
p
re
p
aration
(
WHO
,
Geneva
)
g, p p p ( , )
•Methodological evaluation of a population cohort, publication submitted (The Institut
de Veille sanitaire, France)
•Quality assurance in biobanking, publication submitted (NCRI)
•
ISBER on development and implementation of international proficiency testing
•
ISBER on development and implementation of international proficiency testing
IBBL is developing research collaborations internationally

Potential Barriers to Success
•Acquisition of significant volumes of biospecimens for research can only be
efficient if consent and collection are part of the standard processes of
dia
g
nosis and treatment in re
g
ular medical care
gg
•Electronic health records are essential, as is the continuous updating of data
associated with human tissue samples stored in biobanks
Efficient collection of samples and data pose important
questions relating to data protection