Medical Sciences Summer School:
Fundamentals of Biobanking and Cohort Research
Course Schedule 2016
20 – 24 June 2016
Groningen, The Netherlands
Biobanks and large population cohorts are increasingly recognized as essential tools for exploring
disease origin, understanding how genetics, lifestyle determinants and diseases interact, and
developing new diagnostic and drug therapies.
BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Classroom/
Time
Activity
Mode of
Instruction
Lecturer
3219-0008
(ADL1 VIP)
Day 1: Introduction, Biobanking Context, Case Study, Monday, 20 June 2016
Ronald Stolk
9:00 -10.00
Introduction BIKE Summer School 2016
Interactive
(UMCG)/
Participants
To start our week we would like to give an introduction to the participants. The course staff will introduce themselves
and we will introduce the city of Groningen to our participants. We also invite the course participants to present
themselves and tell the group about where they are from and something about their Biobanking interests.
10.00-10.15
Discuss the program and logistics
Interactive
Bart Scheerder
(BIKE)
During this discussion we will run through the program and discuss the logistics. Practical aspects will be highlighted and
the course participants will have the opportunity to ask practical questions about the upcoming course week.
10.15-11.00
Biobank design methodology
Lecture
Ronald Stolk
(UMCG)
This presentation covers some basic concepts of biobanking research, starting with a discussion on the definition of a
biobank and cohort study. Based on the principals of observational epidemiology, the rationale of biobank/cohort studies
will be explained as well as the methodological challenges of designing these studies.
11.00-12.00
Biobanks: powerful tools to study health and disease
Lecture
Cisca Wijmenga
(UMCG)
Prospective population biobanks are ideal to study the factors contributing to chronic diseases and diseases of the elderly
as biobanks include individuals before, during and after disease onset. These common complex diseases are caused by a
combination of genetic and environmental factors. Biobanks include individuals of different age, gender and are
unselected for disease, yet they collect many different phenotypes in a very standardized way. Often biobanks also
include different levels of omics data. We have been using population biobanks to investigate the genetics of gene
expression and immune function, many of which are reflecting functional consequences of genetic factors that
contribute to common complex diseases. In addition, we study the gut microbiome as a factor that accumulates many
environmental factors. In this lecture I will give an overview on how population-based biobanks can help to unravel
genetic and environmental factors contributing to common complex diseases.
12.00-13.00
LUNCH
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Classroom/
Activity
Mode of
Lecturer
Time
Instruction
13.00-13.30
Interactive
Marcel
Tour Lifelines
Bruinenberg
Bloemsingel 1
13.45-14.45
Lifelines
Lecture
Aafje Dotinga
(Lifelines Bv)
3219-0008
Lifelines is a large, population-based cohort study and biobank. Lifelines’ participants include 167,729 children and adults
in a family design who will be followed over a minimal period of 30 years. Lifelines is a research resource for data on
complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases.
The aim is to facilitate research in the field of Healthy Ageing, ultimately resulting in an increase in healthy life years.
During this lecture, the biobank and its research opportunities will be presented.
Ronald Stolk
(UMCG)
Throughout the week there will be a case study which will be presented by the participants on Friday. The case study will
be presented during this opening session as well.
14.45-15.30
Explanation of the Group Assignments
Interactive
Josine van ‘t
Klooster (UMCG)
The University Medical Center Groningen (UMCG) is a large (~12.000 employees) and renowned medical center with
three core tasks: patient care, education and research. UMCG has chosen “Healthy Ageing” as the overarching theme for
the institution in 2006. Healthy Ageing is seen as a life course process. In this talk the broad vision of the UMCG on
healthy ageing will be shared.
15.30-16.15
Healthy Ageing in the UMCG
18.30-21.00
Welcome diner
http://www.viaromanica.nl/boccaccio/index.php
Lecture
Boccaccio
NOTES:
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Classroom/
Activity
Mode of
Instruction
Time
3219-0008
(ADL1 VIP)
9.00-10.00
Lecturer
Day 2: Clinical Biobanking, Networks and Data Acquisition. Tuesday, 21 June 2016
Questionnaires development
Rosalie Visser
(Lifelines Bv)
Practical
This lecture will be about questionnaire development in Lifelines. First, a short lecture will be given on how Lifelines
develops and processes all questionnaires. Subsequently, the students will be divided into groups to work on the
assignment .
10.00-11.00
Do-It-Yourself measurements in data collection
Lecture
Lisette Eijdems /
Maarten Lahr
(UMCG)
These days there is an exponential increase in (wearable)devices and apps available to collect data on health, disease
course and lifestyle. These Do-It-Yourself (DIY) measurements can either be used to stimulate insight and awareness or
to monitor a person’s health and disease course; sometimes initiated by the physician, sometimes based on personal
initiative. The collected data can offer many opportunities for healthcare, but also for (biobanking)research. In this
session we will discuss the effective use of digital data obtained by e-health applications as DIY-measurements . What
are the future challenges and what are the areas of concern?
We will end this session with a case study on DIY-measurements, that demonstrates the ‘Clinical effects of an optimized
care program with telehealth in heart failure patients in a community hospital in the Netherlands.’
11.00-12.00
Quality control and standardization in biomaterials
processing
Lecture
Stephan Bakker
(UMCG)
This lecture will focus on the experiences gained from decades of biobanking in Groningen. The level of evidence based
quality control and standardization in biomaterials processing is to date limited. We will illustrate with case studies the
relevance of quality control and standardization.
12.00-13.00
13.00-14.00
LUNCH
Sample PRE-analytical Code
Lecture
Jacko Duker
(UMCG)
Using the SPREC code; a benefit for researchers. In my presentation I will introduce you the use of this code.
I will address a few topics of implementation the code. And I hope that I can give you some examples of the benefits of
using this code.
One of the last discussions in the presentation will be if it is possible to exchange the code (QA) with better QC
methods.
14.00-15.00
16.30-18.00
Tour Pathology
Network event/drinks
Interactive
Jacko Duker
Interactive
De Bastille
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Notes:
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Classroom/
Time
Activity
3219-0008
(ADL1 VIP)
Day 3: ICT and Infrastructure. Wednesday, 22 June 2016
09:00-09.45
Mode of
Instruction
How to recognize a good data stewardship plan?" /
Application of FAIR principles along the data life cycle.
Lecture
Lecturer
Rob Hooft (DTL)
As scientists, we have all been taught that all results of our research should end up in scientific papers. And often, when
we start on the research, we already plan to do the work in a way that will make the papers maximally publishable.
Recently there is an addition to this practice: a lot of value for future research is also in the data that is collected and
described in our studies. In this presentation we will see what planning we can do to make our data maximally
publishable too. We will explore the principles of FAIR data (“F”indable, “A”ccessible, “I”nteroperable and “R”e-usable)
and apply them to define actions required in the different phases of the data life cycle.
09.45-10.30
Data stewardship: Think ahead, make a plan!
Lecture
Jan Jurjen
Uitterdijk (UMCG)
This lecture will focus on a practical approach of data stewardship within your research study. Key principles should
guide your data management: protecting the privacy of study subjects and ensuring the scientific integrity of your study.
The preparation of data management activities and the process of handling research data is discussed. As well as how to
deal with security when working with sensitive data, and how to deal with storage and long-term preservation. The
creation of a data management plan makes research data management concrete and practicable and shows that you
have planned how to structure and organize your research data. It also helps selecting an adequate data management
infrastructure and to ensure compliance with law and regulations. The session will show some examples of how the
process is implemented and used within the University Medical Center of Groningen.
10.30-11.15
Enriching biobanks using genotype data
Lecture
Patrick Deelen
(UMCG)
This lecture will describe how genotype data can be used within a biobank context. It will provide the basic concept on
how this data can be processed and how genotype imputation is used to enrich such data. It will show some practical
examples on how we combine genotype data with other measurements to gain new biological insights.
11.15-12.00
Overview biobank research infrastructure and data sharing
Lecture
David van
Enckevort (UMCG)
Biobank research is data intensive research and often requires the pooling of data from several biobanks. In this session
we will cover the (bio)informatics aspects of biobank research based on the data life cycle starting from the pooling of
data from biobanks through the analysis and publication all through the dissemination and reuse of the data. Major
aspects of the session are: Tools for standardization and harmonization of data for pooling and the pitfalls of pooling
data; Tools for data analysis (e.g. tranSMART, MOLGENIS); Tools for dissemination (i.e. Biobank and Sample catalogues,
data and request workflows).
12.00-12.30
12.30-13.30
Bus to Lifestore
LUNCH
LifeStore, Jeverweg 3
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Classroom/
Time
13.30-14.15
Activity
Tube selection considerations
Mode of
Instruction
Lecture
Lecturer
Remi van Liempt
(Micronic)
Selecting the appropriate labware for long term storage of your valuable samples is critical. All kinds of external
influences and labware characteristics can affect the quality of your biological samples, especially when storing fragile
samples at harsh environments. By selecting sample storage labware with the desired specifications, scientists can
concentrate on their life science research instead of having concerns about sample integrity
Jaap Wieling
(Antaeus
Biopharma)
Within pharmaceutical research and development, biomarkers play an increasing role in early candidate selection and
late stage clinical efficacy assessment. Selecting cohorts of healthy study volunteers or patients with predefined
inclusion criteria can be crucial for a successful development program. Biobanks are a valuable source to select those
subjects and potentially screen available sample with a broader biomarker spectrum to map a subpopulation’s profile,
and subsequently study in phase 0 through phase III studies whether changes in life patterns and / or treatment with
investigational medicine may affect health conditions. Analytically well-validated biomarkers will enable clinicians to
clinically validate biomarkers and hence the efficacy of treatments. Prerequisite is a well maintained biobank.
14.15-15.00
Business perspective on biobanking
Lecture
Marcel
Bruinenberg
(Lifelines)
The Lifelines project started with a relative small pilot study in 2006. In the meantime Lifelines has become one of the
biggest longitudinal population based studies. The aim is to follow current included 167.000 volunteers for a period of
30 years with respect to ‘healthy’ ageing. Information is collected by questionnaires and linking to external data
resources, but also during visits to our locations in the Northern part of The Netherlands. During these visits blood,
urine, feces and hair samples are collected. To handle the large amount of data and samples the process had to be
optimized and manual processing had to be changed to a highly automated way of working. Automated sample
processing, LIMS implementation and automated sample storage will be covered. In this presentation the process,
lessons learned and some beneficial examples as well as limitations will be presented. During a tour at the LifeStore
sample storage and risk management will be highlighted. This will be a very interactive session.
15.00-15.30
Sample Storage & Riskmanagement
15.30-16.30
Tour LifeStore
16.30-17.00
Lecture
Marcel
Bruinenberg
(Lifelines)
Bus to UMCG
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Classroom/
Time
3219-0008
(ADL1 VIP)
9.00-10.00
Activity
Mode of
Instruction
Lecturer
Day 4: Participants' Perspectives and Regulations, Thursday, 23 June 2016
Pathology and tissue banking
Lecture
Harry Hollema
(UMCG)
Progress in our understanding of disease and the development of new treatment modalities is dependent on the creation
of well documented tissue banks. The initiative for the creation of these banks comes from researchers, the government
but also from patients. The general acceptance of patients that their tissues can also be used for research is high. Still it is
felt that the creation of tissue banks should be carefully regulated. Especially protection of the patient’s privacy and
adequate information of the patient with written consent for the use of tissue is mandatory. This has not always been so
obvious. The donor of the HeLa cell line derived from a HPV18 positive adenocarcinoma of the cervix, Henrietta Lacks
nor her family, knew anything. Henrietta lacks soon died from her cancer but today there are more living cells on earth
from Henrietta Lacks than during her life. See for further reading “The immortal life of Henrietta Lacks”.
10:00- 11.00
Participant/patient involvement
Lecture
Peggy Manders
(Radboud umc)
It is clear that biobanking is all about the patient. The patient provides personal information and biomaterial. With this
donation she/he contributes to the biobank, which makes new scientific research possible. This scientific research can
yield new knowledge about the disease from which the patient is suffering. This knowledge may come too late for this
patient, but with his/her donation the patient hopes to contribute to the development of diagnostics, new successful
treatments, better prognosis and more effective prevention in the near future. There are different levels in which a
patient can get involved. However, there are several difficulties in how to get the patient involved.
Marie-José
11.00-12.00
Legal aspects: Privacy
Lecture
Bonthuis
(IT’s Privacy)
Marie-José introduces the fundamentals of Dutch and European privacy law, guided by the research process, with a main
focus on anonymization -techniques.
12:00-13:00
LUNCH
Han Boter (UMCG)
Clinical Biobanking in the Netherlands and the UMCG,
Lecture
including ethical issues
In an introduction on clinical Biobanks in the Netherlands and subsequently the UMCG, students will be informed on
some (ethical) issues (e.g. transparency and privacy) of Biobanking. In the Netherlands and some other countries, proper
legislation is lacking. In het Netherlands this has been met by self-regulation by/for relevant stakeholders: a ‘Code of
conduct’ was published in 2011 and subsequently implemented in the UMCG. The most important topics raised in the
‘Code of conduct’ will be discussed, including how these have been taken into account of in the UMCG Biobank
Framework. Also, you will be informed on how the UMCG Biobank Framework is implemented in practice.
In the second part of the lecture a television documentary on Biobanking will be discussed.
13.00-14.00
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Classroom/
Time
14.00-15.30
Activity
Feeding back Biobank Findings to Particpants: A
Fundamental of Cohort Research?
Mode of
Instruction
Lecture
Lecturer
Jasper Bovenberg
If you provide your DNA to 23andMe, you will be provided, within 2- 4 weeks, with information on your genetic risk for a
series of diseases, based on the relation of your genetic scan measurements to relevant scientific literature regarding
genetic risks. If you provide your DNA to a population biobank, however, you will not be provided with any information,
genetic or otherwise, except for a few basic measurements. True, a population biobank is not a commercial personal
genomics company and the utility of “direct-to-consumer” susceptibility testing has been questioned. Nevertheless, the
ability of companies like 23andMe to translate scientific findings into personal health information for their customers, in
a matter of weeks, does raise the question why population biobanks decline any translation of their findings into personal
health information for their participants. The question is even more poignant given that a population biobank has all the
data necessary for a proper translation that commercial providers have not: the phenotype measurements, the medical
record, the family history and the life-style data of the individual participant, all regularly updated and accessible in
standardized format.
In a moot court setting, you will be challenged to explore and defend all pros and cons of feeding back all information to
biobank participants, and get a chance to render the ultimate verdict!
15.45-16.30
Connecting clinical biobanks: PSI as a Dutch reference’
Lecture
Gerhard Zielhuis
(Radbouw UMC)
Clinical biobanks are crucial infrastructures for academic hospitals integrating patient care, medical research and training.
To be successful clinical biobanks need to be rooted in clear scientific vision, integrated in daily health care, professionally
organized, and connected to partnerbiobanks.
Parelsnoer Institute (PSI) connects the clinical biobanks of all eight university medical centers (UMCs) in the Netherlands.
Professional quality is aimed at all levels: biomaterials, clinical data, ICT, procedures, ELSI standards and logistics.
Currently PSI covers 15 disease specific national biobanks. Each UMC coordinates 1-3 of these consortia and contributes
to the collections of all other consortia. PSI as a national network of institutional standardized clinical biobanks started in
2007. It is both ambitious, promising and challenging. We present the experiences with this model.
To be the first to use a biobank: The Parelsnoer IBD
Floris Imhann
Lecture
(UMCG)
Showcase
What happens if you are the first researcher who will use new a biobank. What to expect? What will go wrong? How to
deal with it? This presentation will cover both the logistics, data collection, data quality and some final results. Moreover,
it will cover tips for both biobank designers and first time users.
16.30-17.00
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© mr dr J.A. Bovenberg For BIKE Biobank Summer Course, June 23, 2016
Case study
The invitation.
A healthy 45-year-old woman (X) receives an invitation letter from her family doctor (GP) to participate in a major
study called the “Biobank”. Her GP explains to X that the study aims ‘to track to their sources the causes’ of common
complex disorders, such as diabetes, cancer and Alzheimer’s. These disorders are to reveal these complex
interactions, the Biobank will collect and study genetic, clinical, biological, and molecular information and
corresponding blood and urine samples from 150,000 participants (patients and healthy persons) and their family
members for 30 years. The samples and data collection will be a resource for multiple researchers to ‘correlate the
vast stores of knowledge’ for multiple studies of a host of common complex disorders. Eventually, the researchers
hope to find out what determines the effect of a universal risk factor for a given disorder in a particular individual,
such as X. thought to be caused by a large number of small, often additive effects, representing the outcome of the
interplay, at various levels, of genes, lifestyle and the environment.
Joining the biobank.
X decides to join the study. At an appointment at the assessment centre, a nurse practitioner measures her height,
weight, BMI, pulmonary function, bone density and blood pressure. A specially trained staff member collects three
tablespoons of her blood for future DNA-analysis and she provides a urine sample. She fills in a questionnaire,
answering detailed questions about her education, employment, physical activity, nutrition habits, general health
condition, smoking and alcohol consumption, hospitalizations, diseases suffered, medicaments used, hormonal
contraceptive preparations and menopause medicaments, and pregnancies. There are also questions about her
nationality and native language, as well as detailed questions relating to her parents, grandparents and greatgrandparents. X signs a consent form allowing the Biobank to re-contact her and to follow her health for the term of
her participation, directly through her medical record and through other records that may be related to her health
(e.g. occupational or residential information). She goes home with a print-out of her measurements. Every other
year, she shows up at the appointment centre to provide fresh samples and updates to the questionnaires.
Demanding disclosure.
Halfway into the study, X develops diabetes and suffers a heart attack. As cardiovascular diseases run in the family
she is fearful of an imminent stroke. Her daughter has just been recruited into the study and was informed that both
her cholesterol level and her blood pressure were abnormally high. Fearing that this may all be related and ‘genetic’,
X contacts the Biobank. For some years now, the Biobank’s newsletters have alerted her to a series of scientific
publications pertaining to these disorders, all based on research on the Biobank. She reminds the Biobank of its
stated ambition that research findings should be ‘quickly available for the prevention and cure of disease’. Arguing
that the Biobank is in a perfect position to translate its findings to her individual situation, she demands disclosure of
all genetic and non-genetic risk information pertaining to her present and future health, regardless of whether the
risks indicated by the findings are imminently life-threatening, high, moderate or low risk, regardless of whether the
findings concern a condition that is treatable, actionable, have reproductive importance or are merely recreational,
and regardless of whether the findings relate to conditions that are late or early onset.
The lawsuit.
The Biobank denies her request, referring to the Participant Information Brochure, which reads as follows:
Participants will NOT be provided with information (genetic or otherwise) about their own individual results or
incidental findings derived from or made in the course of examination of the database or samples by research
undertaken after enrolment.
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X initiates legal proceedings, challenging the Biobank’s non-disclosure policy. Her claim reads as follows
Full disclosure of all genetic and non-genetic risk information pertaining to her present and future health, regardless
of whether the risks indicated by the findings are imminently life-threatening, high, moderate or low risk, regardless
of whether the findings concern a condition that is treatable, actionable, have reproductive importance or are
merely recreational, and regardless of whether the findings relate to conditions that are late or early onset. She
posts her complaint on the Biobank webforum, which in no time is filled with expressions of support from thousands
of other participants, who are willing to join the lawsuit.
Team A represents X. Team B represents the Biobank. Team C is the Court, interrogating the parties to the case and
rendering the verdict.
Notes:
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Classroom/
Time
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(ADL1 VIP)
Activity
Mode of
Instruction
Lecturer
Day 5: Practical Considerations and Presentations, Friday, 24 June 2016
9.00-10.00
Imaging in Biobanking
Lecture
Ronald Borra
(UMCG)
Imaging in biobanking is associated with several challenges, particularly regarding standardization of imaging
measurements across subjects and imaging sites. This presentation will focus on challenges related to obtaining
Magnetic Resonance Imaging (MRI) data and MRI-derived imaging biomarkers, and the possibilities that exists to
improve standardization of both data acquisition and analysis. Furthermore, highly sensitive but non-specific methods,
such as MRI, pose a large challenge regarding incidental (unexpected) findings in imaging biobanking, making an
effective plan on how to deal with these findings an absolute necessity. This presentation will discuss several options on
how to deal with this findings, including elements of interest both for medical doctors (students) as well as non-medical
personnel involved in imaging studies.
10.00-11.00
Standardization in biobanks Quality Management Systems
paves the way for acknowledged scientific
Lecture
Andrea Wütte
(BBMRI-ERIC)
Quality Management is essential and becomes increasingly important for academic research. For BBMRI-ERIC any
human biological resource is considered essential raw material for the enhancements of new approaches to therapy,
new drugs or diagnostic assays in health research. Hence, these biological resources are necessarily required to be
subject to the highest quality standards and shall be comparable within the BBMRI-ERIC infrastructure. To date there are
71 technical experts from universities, biobanks and laboratory infrastructures of 15 Member states contributing to an
unprecedented Pan-European intra-biobank and inter-biobank benchmark process towards standardization of preexamination processes of applicable technical specifications and standards of CEN and ISO. This lecture will provide an
overview on the joined forces of European biobanks to improve the quality output of human biological resources.
Bart Scheerder
(BIKE)
Biobanking research depends on a high level of automation and standardization. Many tools and templates have been
developed by different organizations.
The BioSHaRE-EU project has created a catalogue of tools and services for data sharing, which will be the basis for this
lecture.
11.00-12.00
BiKE / Practical Tools and template
12.00-13.00
Presentations of group assignment and discussions
13:00-14.30
Farewell lunch
Lecture
Restaurant De Bastille
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Course Instructors (by order of appearance)
Last Name
Name
Email
Institute / Company
Stolk
Ronald
[email protected]
UMCG
Professor Ronald Stolk is an internationally recognized expert in biobank/cohort studies and related Big Data in Health.
Currently he is “Director Research Data & Biobanking” at the UMCG. Since biobank studies have moved from samplebased towards (big) data-based research, he is board member of several national organizations on Big Data in Health like
NFU data4lifesciences (coordination of research IT in all Dutch UMC’s), BBMRI-NL (federation of Dutch biobank studies),
DTL/ELIXIR-NL (bioinformatics for life sciences). Moreover, professor Stolk is actively involved in European and
worldwide e-infrastructure and biobank projects.
Wijmenga
Cisca
[email protected]
UMCG
Prof. Cisca Wijmenga has been Professor of Human Genetics at the University of Groningen and head of the Genetics
Department of the University Medical Center Groningen since 2007. The aim of her research is to understand how
genetic variation translates into phenotypic variation. Over the years she has been involved in genome-wide studies
(GWAS) and identified numerous loci for diseases like type 2 diabetes, celiac disease and other immune-related
disorders such as type 1 diabetes, rheumatoid arthritis and inflammatory bowel disease. To understand how common
GWAS variants contribute to disease susceptibility she makes use of two population-based cohorts: Lifelines DEEP and
500FG. Both cohorts have extensive ‘omics’ data including transcriptomics, cytokine profiling, metabolomics, and
microbiomics. Using these cohorts it has for example become possible to investigate down-stream consequences of
GWAS variants on gene expression and on intermediate phenotypes such as cytokine production. In November 2012
she received a prestigious ERC Advanced Grant for her research on Celiac disease. In 2015 she has been awarded a
Spinoza Prize, also referred to as the 'Dutch Nobel Prize', for her research into complex genetic diseases. Prof. Wijmenga
is a member of the Royal Netherlands Academy of Arts and Sciences (KNAW).
Dotinga
Afje
[email protected]
Lifelines Bv
Aafje Dotinga is a social psychologist and epidemiologist and in her research focused on health behavior, health
interventions and health differences between socio economic and cultural groups. She is manager of the Research Office
of Lifelines. Lifelines is a three-generation longitudinal population-based study and biobank to investigate risk factors of
multifactorial diseases, including 167.729 participants in three generations. The Research Office is the link between
Lifelines and scientists, policy makers and others who want to make use of the collected materials.
Van ‘t Klooster
Josine
[email protected]
UMCG
Josine van ‘t Klooster (Erasmus Mundus MA, University of Groningen/ Universidad de Deusto, San Sebastián (Spain),
2008) works for the UMCG since 2008. From 2008 – 2013 she served as the EU Liaison Officer Healthy Ageing on behalf
of the UMCG in Brussels. In 2013 she became responsible for the International Healthy Ageing Program of UMCG, with
the principal task of developing and strengthening international strategic partnerships. Van ‘t Klooster has considerable
experience in setting-up a large number of EU and international partnerships and projects. Van ‘t Klooster is since
December 2015 the Head of the Healthy Ageing Team at UMCG.
[email protected]
Lifelines Bv
Visser
Rosalie
Rosalie works for Lifelines since 2009, where she leads the team responsible for the questionnaires.
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Eijdems
Lisette
[email protected]
UMCG
Lisette Eijdems is a Molecular Biologist and working at the UMCG as Scientific Policy Advisor on Research Data &
Biobanking. She did her PhD research on Multidrug resistance mechanisms at the National Cancer Institute (NKI/AvL,
Amsterdam) and worked as a Postdoctoral Researcher at the Cancer Institute of UNM (University of New Mexico,
Albuquerque, USA). Back in the Netherlands she became involved in the development and implementation of UMCG
Research Policy as Head of the Research Office (dept.).Subsequently she worked for the Healthy Ageing Programme and
currently for Research Data and Biobanking.
Biobank/Cohort studies are a red line in her carrier. From NIH-funded research on the AML cohort of South West
Oncology Group (SWOG), to the founding group of the Lifelines Biobank and Cohort study, the UMCG Steering group
biobanking, and the central Expert Team of the national Parelsnoer Institute (PSI). Currently she has a leading role in local
and national projects on data and biomaterials for research, as for the national BBMRI-NL 2.0 project, on e-health,
especially Do-It-Yourself measurements, in (biobanking) research.
Lahr
[email protected]
Maarten
UMCG
Maarten M.H. Lahr did his PhD research at the UMCG, department of Neurology, in the field of organizational models for
acute stroke care. In 2013 he was appointed postdoc researcher with Healthy Ageing Team UMCG on an European
project aimed at setting up and implementing eHealth and integrated care models for chronic diseases. In this period he
combined his postdoc position with a position as Managing Director of SPRINT center for research excellence, IMDI
programme, ZonMw. His research focuses on modelling and (early) evaluation of innovations and new treatments in
healthcare. Recently he has been awarded two European grants in the field of eHealth and integrated care for chronic
diseases.
Bakker
Stephan
[email protected]
UMCG
Prof. Stephan Bakker, MD, PhD (1963) studied medicine at the University of Leiden (1988). He specialized in internal
medicine and nephrology (1995). He was awarded a PhD degree with a thesis entitled “Pathophysiology of the insulin
resistance syndrome”. Currently, he is member of the board and manager of the laboratory and the biobank of the
PREVEND cohort study in 8,592 inhabitants of the city of Groningen, principal investigator of the TransplantLines
biobank and cohort study and program leader of the Groningen Institute of Organ Transplantation. He is co-author on
more than 400 publications in international, peer-reviewed journals.
Duker
Jacko
[email protected]
UMCG
Jacko Duker is an expert in handling large amount of samples and data. His focus is on increasing quality through
standardization of the laboratory process. In 1997 he joined the first large-scale biobank project in the UMCG, PREVEND,
as a research technician. With the creation of the Lifelines project in 2006, he became responsible for the design and
deployment of the fully robotic liquid handling processes and the visual LIMS workflow.
As a laboratory manager he has managed public procurement projects, according to European regulations, including 80°C freezers, 2D bar-coded tubes, and a -80°C robotic freezer facility. In his current position as Tissue Manager he is
responsible for the implementation the regulatory aspects of tissue collection related to patient care and research in
Pathology. Within the Biobank Committee in the UMCG he is an active member and is working on topics such as patient
information; patient; patient objection registration procedures; central sample storage; regulation of central storage.
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Hooft
Rob
[email protected]
DTL
Rob Hooft was educated as a structural chemist at Utrecht University under Professor Jan Kroon in the Bijvoet
Laboratory. His major had the subject of Maximum Entropy in X-ray diffraction. Rob did his PhD studies in the same lab,
on the subject of structure-activity relationships of sweet tasting compounds. For this study he developed several
(statistical) methods to facilitate the simulation of sugar-like molecules. He spent 4 years at the EMBL in Heidelberg
where he developed tools to verify the quality of protein structures in the group of Gert Vriend and Chris Sander. He
joined the company Nonius in 1997 where he developed application software for a diffraction system with a CCD
detector.
When Nonius and Bruker AXS merged in 2001, Rob led the team of developers for the company in Delft. This team
developed components and systems for X-ray diffraction analysis. Rob treated management as a new scientific subject
that he tried to master. Even as a manager, Rob never lost the attraction to solving X-ray structures and improvements of
algorithms.
When Bruker AXS has stopped their R&D in the Netherlands, Rob moved back to the academic world and joined the
Netherlands center for Bioinformatics, NBIC, as CTO for the service-directed program. Via a two year excursion to the
Netherlands eScience Center from where he ran the data program of the Dutch Techcenter for Life Sciences (DTL) he is
now working for DTL itself managing the Dutch tasks in the European ELIXIR infrastructure for life science data.
Uitterdijk
Jan Jurjen
[email protected]
UMCG/TCC
Jan Jurjen Uitterdijk studied ' Computer Science ' at the NHL University of Applied Sciences and 'broadband
communication ' at The Hague University of Applied Sciences. The greater part of his professional career he fulfilled the
role of team leader and project manager. His knowledge and experience is of origin in the field of embedded software
development and the automation industry. He worked for various R&D organizations and recent years he focused more
and more on activities related to the research domain. Currently he is working for the Trial Coordinator Center of the
University Medical Center Groningen , where a wide range of services is provided around clinical research.
Deelen
Patrick
[email protected]
UMCG
Patrick Deelen is a 3rd year bio-informatics PhD student at the Genetics Department of the UMCG. During the first year
of his PhD he worked mainly on the Genome of the Netherlands whole genome sequencing effort where 250 biobank
trio’s where sequenced. Here he worked on using the data as an imputation reference for samples for which only chip
genotypes are available. Currently he is working mostly with RNA-seq data which was generated in a collaborative effort
with several Dutch biobanks. With this data they try to better understand how genetic risk factors affect gene-expression
levels. Patrick is also working on creating a new release of the genotype data of Lifelines.
Van Enckevort
David
[email protected]
UMCG/GCC
David van Enckevort is a project manager in the Genomics Coordination Center of the UMCG. As a project manager he
supports several projects in the field of biobanking, amongst others the BBMRI-NL 2 Catalogue Task, the BBMRI-ERIC
biobank directory and RD-Connect Sample Catalogue. The focus of his work is on improving discoverability of biobank
resources through improved online access. David is a leading member of the MIABIS working group of the BBMRI-ERIC,
which developed the MIABIS 2.0 Minimal Information Model for Biobanking and an active member of the ISBER
informatics working group, ISBER resource locator working group and the GA4GH / IRDIRC Participant Unique Identifier
working group.
David has a background in commercial IT companies for 11 years before he made the switch to bioinformatics in 2010.
From 2011 he has been the Technical Project Lead of the Biobanking Taskforce of NBIC.
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Van Liempt
Remi
[email protected]
Micronic
Over the last 15 years Remi van Liempt became an expert in the sample storage and preservation market. After his study
Industrial Automation with a specialization in International Business Remi joined Micronic as Product Specialist. Remi
focused on the international expansion of Micronic’s activities as well as the adaptation of the novel 2D coded tube
system at that time. Nowadays he is responsible for all Micronic sales and marketing activities in the regions EMEA and
APAC. Combining his technical background, his valuable market knowledge and his ability to interact internationally,
Remi contributes to the continuous growth of the Micronic business.
Wieling
Jaap
[email protected]
Antaeus BioPharma
Jaap Wieling is a drug development expert, pharmacologist with 25+ years of international (bio)pharmaceutical
development, including non-clinical and early-stage clinical development and biopharmaceutical processing. Has a track
record as entrepreneur with executive and research management positions at QPS, Xendo, PRA International, DSM and
TNO. University lecturer, conference presenter and scientific paper author for 25+ years on scientific, technical and
regulatory topics.
Jaap holds an MSc in pharmacology and a PhD in mathematics and physical sciences from the University of Groningen.
Currently Jaap is CSO at BiosanaPharma and he is an independant consultant at Antaeus Biopharma.
Bruinenberg
Marcel
[email protected]
Lifelines Bv
Marcel Bruinenberg completed his study at the University for Applied Sciences (Laboratory and Process Technologies) in
1993. Throughout his career Marcel has been involved in starting new laboratory facilities, ranging from small diagnostic
labs to bigger genetic service laboratories. Since 2006 he has been a consultant for Lifelines. Marcel accepted a full
position at Lifelines in 2008. He started a new highly automated Biobanking laboratory. After that he headed the full
genome analysis of 20.000 people of the Lifelines study, served as project leader of several add-on studies within Lifelines
and was a pioneer in services for researchers that wanted to use Lifelines data, samples or facilities. He combined this
with being project manager of LifeStore. This facility holds one of the largest automated -80 freezer stores worldwide (>
8 million samples) combined with 170 Ultra low temperature freezers. Currently Marcel is heading this facility.
Skills (keywords): Project Management, Biobanking, Laboratory Facilities, High Throughput Screening (HTS), Genetics,
DNA,RNA, Laboratory Automation, Sample Management, LIMS, Building Management, Risk Assessment and Risk
Management, Procurement.
Hollema
Harry
[email protected]
UMCG
Harry Hollema, born in Emmen 1955, completed his study of Medicine and residency of Pathology at the University
MedicaI Center of Groningen (UMCG), the Netherlands. In 1987 he became staff member and consultant in
gynaecopathology at the Department of Pathology at UMCG and finalized his PhD thesis on “the subtyping of nonHodgkin lymphoma” in 1992. His diagnostic activities now cover the whole spectrum of gynaecopathology. In 2004 he
was appointed Full Professor in Pathology with a special interest in gynaecopathology. Professor Hollema’s long term
research interests particularly relate to gynaecopathology. He participates in national and international collaborative
research groups on this subject. Member of FEDERA helped to develop the "Human Tissue and Medical Research: Code
of conduct for responsible use (2011)".
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Manders
Peggy
[email protected]
Radboud UMC / PSI
Peggy Manders is an epidemiologist and works as a manager at the Radboud Biobank, the central biobank facility of the
Radboud University Nijmegen Medical Centre (www.radboudbiobank.nl). She is also employed at the Department of
Genetics where she is, among other things, responsible for developing informed consent procedures for various
biobanks and the progress of the Biobank Hereditary Cancer. She is also coordinator for PSI (Parelsnoer Institute,
www.parelsnoer.org) on behalf of the Radboud University Nijmegen Medical Centre.
Bonthuis
Marie-José
[email protected]
Lifelines Bv
Marie-José Bonthuis works for several health organizations as legal advisor and Data Protection Officer, and also for the
biobank Lifelines. She has a special focus on law and IT. Her field of expertise is the development of the Dutch Electronic
Patient Records. In her opinion privacy is a parameter for good service, rather than a trade-off.
Boter
Han
[email protected]
UMCG / PSI
Dr. Han Boter is the coordinator of Biobanking in the UMCG for both UMCG Biobanks and the National Biobank
‘Parelsnoer Institute’. He started his career as a Health Scientist and during 15 years he performed clinical scientific
studies in patients with stroke, schizophrenia and in elderly care.
Bovenberg
Jasper
[email protected]
Jasper Bovenberg is a lawyer admitted to the bars of Haarlem and New York and the founder of the Legal Pathways
Institute for Health and Bio-Law (www.jbovenberg.com)
Zielhuis
Gerhard
[email protected]
Radboud UMC
Gerhard Zielhuis (1953) studied Human Nutrition and Epidemiology at Wageningen University and Research. Since 1979
he is employed at the Radboud University Medical Centre in Nijmegen, the Netherlands for Epidemiology teaching and
research. He received his PhD 1985 with a thesis about school health and epidemiologic research, but most of his
scientific production was in the domain of middle ear infections in children. Since this line of research has expired, he
focuses on research management and supervision of other investigators. In addition he is still active in teaching research
methods and epidemiology in the Biomedical Sciences curriculum, of which he was one of the founding fathers.
Gerhard is full professor, former head of the department for health Evidence, director of the Radboud Biobank and
managing director of Parelsnoer Institute. He is member of the Scientific Board of BBMRI-NL and active member of ESBB.
In addition he acts as expert advisor for the Health Council and for the Dutch Research Organization. Gerhard has
published about 150 scientific papers in international journals and (co)authors two textbooks (in Dutch) on research
methods and epidemiology.
Imhann
Floris
[email protected]
Rijksuniversiteit Groningen
Floris Imhann (Delft 1985) founded his IT company in 2006 and graduated from medical school in 2011. As of 2013 he is
a PhD-student at the Departments of Gastroenterology and Genetics in the University Medical Center Groningen
researching microbial genetics in Inflammatory Bowel Disease patients. In 2014 Floris spent the summer at the Broad
Institute of Harvard and MIT where he worked with experts and acquired basic bioinformatics skills to investigate the gut
microbiome. He is part of the multidisciplinary Microbiome Research Group of the UMCG. Together with Lieke
Spekhorst, Marijn Visschedijk and Noortje Festen, he worked on the three studies that comprise the Parelsnoer IBD
Showcase and worked mostly on the logistics, data acquisition and data quality.
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Borra
Ronald
[email protected]
UMCG
Ronald Borra, MD, PhD received his medical training at both the University of Groningen, the Netherlands and the
University of Turku, Finland. He obtained his PhD in 2009 at the University of Turku From 2010 to 2015 he was a postdoctoral research fellow in Radiology at Harvard Medical School, Massachusetts General Hostpital – A. A. Martinos
Center for Biomedical Imaging, Boston USA.
In 2010 he was appointed adjunct professor in experimental radiology at the University of Turku, Finland and is currently
an associate level professor at the University of Groningen. His research has focused on optimally combining PET and
(advanced) MR methods to gain better insight in the pathogenesis of type 2 diabetes, obesity and cardiovascular disease
in the context of smaller and larger-scale imaging studies. At Harvard his work involved the development of novel MRderived biomarkers, such as Vessel Architectural Imaging as well as the development and validation of novel hybrid
PET/MR imaging methods and tracers.
Wütte
Andrea
[email protected]
BBMRI-ERIC
Andrea Wutte, is biologist, she started her academic career 1996 as research assistant in the field of endocrinology and
metabolism at the Medical University of Graz (MUG). She became a clinical project manager and investigator. As clinical
quality manager she was responsible for the establishment and implementation of a certified Quality Management
System for clinical trials according to ethically and legally binding directives, principles and laws. In 2004, she became the
head of the Clinical Research Centre at the MUG. She designed and lectured several ICH-GCP workshop series for the
industry. In 2009, Andrea stepped out of academia to make her contributions to an industrial cluster, she has been
recruited as senior consultant to manage the developments in the field of biobanking and biomarker-technology, within
the defined economic and strategic aims of the cluster. She led the cluster to certification under ISO 9001 and ISO
29990. Since November 2014 Andrea is Quality Manager for BBMRI-ERIC. She is responsible to support biobanks in
implementing and improving appropriate quality standards. As liaison officer to ISO/TC 276 Biotechnology, and ISO/TC
212 she is contributing to the standard development for biobanks and bioresources and sharing this development within
the BBMRI-ERIC community.
Scheerder
Bart
[email protected]
BiKE
Bart Scheerder has been appointed as senior consultant biobanking at the UMCG Biobanking and cohorts Knowledge
and Expertise (BiKE) center since 2014. His main activity is to implement the knowledge and expertise which has been
developed in Groningen to other institutes and companies globally. Before his for BiKE he worked over ten years as a
project manager in clinical trials, executing projects for pharmaceutical industry, medical device companies and academic
sponsors. Bart is member of the board of the ACRON, the Association of Contract Research Organizations in the
Netherlands. His particular interest is the Public Private collaboration in biobank research as a step towards sustainable
Biobanking.
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Notes:
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BiKE – Summer School: Fundamentals of Biobanking and Cohort Research
Course Participants
Last name
Amato
Daud
Dolathkah
ElObeid
First name
Valentina
Nur Aizati Athirah
Roya
Adila
Golbin
Govindrao
Gramatyuk
Denis
Poormina
Svetlana
Gundersen
Ishikuro
Astrid
Mami
Juranek
Stefan
Lumeij
Johannes Thomas (Sjeng)
Macheiner
Metoki
Tanja
Hirohito
Nimgire
Strijker
Ugargol
Neha
Marin
Veena Allen
Van der Horst
Frans
Van Bolhuis
Vanhees
Jurjen
Kimberly
Institute/Company
Center of Excellence on Ageing
University Medical Center Groningen
Tabriz University of Medical Sciences
King Abdulluah National Research
Center
Burdenko Neurosurgical Institue
Krishagni Solutions Pvt. Ltd
Grigoriev Institute for Medical
Radiology, Academy of Medical
Science of Ukraine
Trondheim University Hospital
Tohoku Medical Megabank
Organization,
European Research Institute for the
Biology of Aging
Royal Netherlands Hunting
Association
Biobank Graz
Division of Public Health, Hygiene and
Epidemiology Faculty of Medicine
Krishagni Solutions Pvt Ltd
Academic Medical Center Amsterdam
Colombia Asia Referral Hospital
Bangalore
Reinier-Haga Medisch Diagnostisch
Centrum b.v.
Lifelines Bv
Biobank Jessa ziekenhuis
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