biobanks are defined as collections of samples of human substances (e.g. cells, blood, tissue or DNA) that are or can be associated with personal data and information on their donors. Biobanks have a twofold character, as collections of both samples and data.

1. Golden Standard in
Biobanking for Vitiligo
and Rare Diseases
Igor
V.
Korobko,
VR
Founda0on
Chief
Scien0fic
Director

2. What is a biobank for a specific disease?
“... biobanks are defined as collections of samples
of human substances (e.g. cells, blood, tissue or
DNA) that are or can be associated with personal
data and information on their donors. Biobanks
have a twofold character, as collections of both
samples and data”.
European Medicines Agency. Draft concept paper on the development of a
guideline on biobanks issues relevant to pharmacogenetics

3. Why there is a need for biobanks for rare
and neglected diseases?
• Samples for lab research
• Clinical data analysis “… to establish new patient stratification
principles and for revealing unknown disease correlations”
Jensen et al., Nature Review Genetics (2012) 13: 395-405
• Irrelevant factors affecting the disease

4. Why there is a need for biobanks for rare
and neglected diseases?
• Lengthy biosample collection
• Lack of standards in data and sample collection
• Networking problems

5. What biobank is needed for?
ü to fuel research with well-described biosample
collection
ü to enable finding overseen correlations between
clinical parameters
ü to identify factors (inducers, treatments) previously
not linked to the disease
ü to efficiently enroll patients into clinical studies
and more ...

6. Good rare/neglected disease biobank
ingredients: a recipe
ü Standard protocol for data collection
ü Standard protocol for biosample
collection
ü Networking
ü Common database (make available for
researchers, attach search engines and
analytical tools)
ü Ethical concerns
ü Motivation for physicians
ü Funding

7. Vitiligo Biobank:
implementation of the concept for a neglected disease
Vitiligo Biobank is an initiative launched, supported and operated
by the VR Foundation

8. Expecting impact of Vitiligo biobank on
vitiligo management
• Vitiligo is a complex multifactorial disease with diverse triggers
and mechanisms of pathogenesis.
• Despite being one of the most common skin diseases, owing to
its non-life threatening nature, vitiligo is truly neglected disease.
• Existing treatments have limited efficiency.
The need for research of vitiligo to understand mechanisms
of pathogenesis, to develop novel treatment modalities, to
offer personalized treatment options to patients.

9. Expecting impact of Vitiligo biobank on
vitiligo management
Biobank would promote and speed up reaching these goals
through:
ü expediting experimental (both lab & clinical) research
ü revealing overseen correlations between clinical parameters
ü repurposing existing treatments & identifying
unconventional ways of disease management

10. Expecting impact of Vitiligo biobank on
vitiligo management
... But not only through enabling access to data and biosamples
Truly collaborative project between
researchers, clinicians and patients, in
pursuit for vitiligo therapy development

11. Vitiligo biobank: data collection
Standard protocols for data collection
ü t akes into account all possibly informative
parameters yet excluded those which are not
important to save time at data collection
ü is compiled based on numerous physician's
opinions and analytical analysis of revealed or
possible correlation
ü is built based on tabulated data, an important issue
for subsequent analysis

12. Vitiligo biobank today: data collection
Patient Biobank Record forms enveloping:
ü maximally tabulated data collection;
ü range of parameters carefully defined for all essential events to be
recorded;
and designed for:
ü primary visits;
ü follow-up visits;
ü specific supplementary forms for transplantation procedures.
Guideline for data collection
ü to ensure quality and uniformity of the collected data, dataset
labeling & ethical concern compliance.

13. Vitiligo biobank: sample collection
Standard protocols and guidelines for biosample
collection depending on the sample type
Types of collected samples
Criteria for sample type selection:
ü patient's compliance,
ü usability in research for understanding of
pathomechanism,
ü usability as biosamples for routine clinical tests,
ü suitability for ready-to-go sample collection,
ü cost of collection,
ü accessibility to proper storage conditions.

14. Vitiligo biobank today: sample collection
Serum Blood
ü reading of versatile parameters ü genetic research, present and
(from cytokines/GF, future
metabolites to microRNA) ü no special intervention if
ü easy to admit for clinical use collected along with serum
ü routine collection procedure
ü time-course/response analysis Hair bulbs
opportunity
ü limited genetic research
ü collected along with other blood
capability
tests thus having high patient
ü no special requirements for
tolerance
collection and storage

15.
Vitiligo biobank: ethical concerns
Vitiligo bioblank implicates policy of strict
adherence to all applicable ethical concerns
and requirements

16. Vitiligo biobank: networking
Multiple sites for biosample and data collection
enables robust growth of database
Implemented concept:
ü local storage of biosamples, centralized storage of
data
ü biosamples are available for research on demand
ü availability is either physical or virtual

17. Vitiligo biobank: networking
Benefits of the implemented concept:
ü no need for sample transportation so expenses are cut
ü no conflict with local legal issues
ü increase in biobank analytical power
ü broadening geography of vitiligo research
ü promoting local vitiligo research projects through the
use of local biobank opportunities

18. Vitiligo biobank today: networking
Six locations worldwide operating now, several to
join shortly

19. Vitiligo biobank:
data recording, storage and management
Integrated solution for data recording, collection and
storage
ü data entry and analysis
ü datasets selection based on pre-set parameters
(virtual patient enrollment)
ü biosample availability information
ü ensuring high compliance of the physician

20. Vitiligo biobank:
data recording, storage and management
Database and more...
Cloudy: a system providing capabilities for…
ü data storage in searchable and analyzable format
ü dynamic database field updates
ü entering and storage of non-tabulated data such as
text and images
ü network access (with later local versions
synchronized with database to be released)
... and more for physician & patient!

21. Biobank: attracting physicians
Cloudy system:
merging data collection (research area) with
capabilities for
easy and robust tracing of patient's disease
conditions and treatment response

22. Biobank: attracting physicians
Features:
ü Electronic medical record tuned up for vitiligo
ü Visit scheduling
ü One-click frequently used treatment protocol addition
ü Visualization of selected parameters in a time scale

23. Vitiligo biobank today: overview
Six locations worldwide operating now, several to
join shortly
More than 650 datasets were acquired since the
beginning of operation in July 2012
Cloudy smart interface and data collection electronic
system to be released soon

24. Welcome to join
Vitiligo biobank :
in networking, research projects,
funding

25. Thank you for your
attention !
www.vrfounda/on.org
Web:
vi/ligobiobank.org
Email:
biobank@vrfounda/on.org