Golden Standard in  Biobanking for Vitiligo    and Rare Diseases	               Igor	  V.	  Korobko,	  VR	  Founda0on	  Ch...
What is a biobank for a specific disease?                                	  “... biobanks are defined as collections of sa...
Why there is a need for biobanks for rare        and neglected diseases?                             	  •  Samples for lab...
Why there is a need for biobanks for rare        and neglected diseases?      	  • Lengthy biosample collection• Lack of s...
What biobank is needed for?              	  ü to fuel research with well-described biosample  collectionü to enable find...
Good rare/neglected disease biobank       ingredients: a recipeü  Standard protocol for data collectionü  Standard proto...
Vitiligo Biobank:implementation of the concept for a neglected disease            	  Vitiligo Biobank is an initiative lau...
Expecting impact of Vitiligo biobank on          vitiligo management                         	    •  Vitiligo is a complex...
Expecting impact of Vitiligo biobank on          vitiligo management                   	    Biobank would promote and spee...
Expecting impact of Vitiligo biobank on         vitiligo management                   	   ... But not only through enablin...
Vitiligo biobank: data collection     	       Standard protocols for data collectionü t akes into account all possibly in...
Vitiligo biobank today: data collection                    	              Patient Biobank Record forms enveloping:ü maxim...
Vitiligo biobank: sample collection             	  Standard protocols and guidelines for biosample    collection depending...
Vitiligo biobank today: sample collection                    	                 Serum                                  Bloo...
      Vitiligo biobank: ethical concernsVitiligo bioblank implicates policy of strictadherence to all applicable ethical c...
Vitiligo biobank: networking         	     Multiple sites for biosample and data collection          enables robust growth...
Vitiligo biobank: networking         	           Benefits of the implemented concept:ü no need for sample transportation ...
Vitiligo biobank today: networking        	  Six locations worldwide operating now, several to                   join shor...
Vitiligo biobank:          data recording, storage and management	  Integrated solution for data recording, collection and...
Vitiligo biobank:         data recording, storage and management	                  Database and more...    Cloudy: a syste...
Biobank: attracting physicians	                  Cloudy system:  merging data collection (research area) with             ...
Biobank: attracting physicians	                           Features:ü Electronic medical record tuned up for vitiligoü Vi...
Vitiligo biobank today: overview       	  Six locations worldwide operating now, several tojoin shortlyMore than 650 datas...
Welcome to join     Vitiligo biobank :in networking, research projects,            funding	  
Thank you for your     attention !	         www.vrfounda/on.org	     Web:	  vi/ligobiobank.org	  Email:	  biobank@vrfounda...
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Vitiligo biobank presentation dec 2012 yv ik

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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.

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Vitiligo biobank presentation dec 2012 yv ik

  1. 1. Golden Standard in Biobanking for Vitiligo and Rare Diseases   Igor  V.  Korobko,  VR  Founda0on  Chief  Scien0fic  Director    
  2. 2. What is a biobank for a specific disease?  “... biobanks are defined as collections of samplesof human substances (e.g. cells, blood, tissue orDNA) that are or can be associated with personaldata and information on their donors. Biobankshave a twofold character, as collections of bothsamples and data”.European Medicines Agency. Draft concept paper on the development of aguideline on biobanks issues relevant to pharmacogenetics  
  3. 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. 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. 5. What biobank is needed for?  ü to fuel research with well-described biosample collectionü to enable finding overseen correlations between clinical parametersü to identify factors (inducers, treatments) previously not linked to the diseaseü to efficiently enroll patients into clinical studies and more ...
  6. 6. Good rare/neglected disease biobank ingredients: a recipeü  Standard protocol for data collectionü  Standard protocol for biosample collectionü  Networkingü  Common database (make available for researchers, attach search engines and analytical tools)ü  Ethical concernsü  Motivation for physiciansü  Funding
  7. 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. 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 mechanismsof pathogenesis, to develop novel treatment modalities, tooffer personalized treatment options to patients.
  9. 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) researchü  revealing overseen correlations between clinical parametersü  repurposing existing treatments & identifying unconventional ways of disease management
  10. 10. Expecting impact of Vitiligo biobank on vitiligo management   ... But not only through enabling access to data and biosamplesTruly collaborative project betweenresearchers, clinicians and patients, inpursuit for vitiligo therapy development
  11. 11. Vitiligo biobank: data collection   Standard protocols for data collectionü t akes into account all possibly informative parameters yet excluded those which are not important to save time at data collectionü is compiled based on numerous physicians opinions and analytical analysis of revealed or possible correlationü is built based on tabulated data, an important issue for subsequent analysis
  12. 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 collectionü to ensure quality and uniformity of the collected data, dataset labeling & ethical concern compliance.
  13. 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 patients 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. 14. Vitiligo biobank today: sample collection   Serum Bloodü reading of versatile parameters ü genetic research, present and (from cytokines/GF, future metabolites to microRNA) ü no special intervention ifü easy to admit for clinical use collected along with serumü routine collection procedureü time-course/response analysis Hair bulbs opportunity ü limited genetic researchü collected along with other blood capability tests thus having high patient ü no special requirements for tolerance collection and storage
  15. 15.   Vitiligo biobank: ethical concernsVitiligo bioblank implicates policy of strictadherence to all applicable ethical concerns and requirements
  16. 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 dataü biosamples are available for research on demandü availability is either physical or virtual
  17. 17. Vitiligo biobank: networking   Benefits of the implemented concept:ü no need for sample transportation so expenses are cutü no conflict with local legal issuesü increase in biobank analytical powerü broadening geography of vitiligo researchü promoting local vitiligo research projects through the use of local biobank opportunities
  18. 18. Vitiligo biobank today: networking  Six locations worldwide operating now, several to join shortly
  19. 19. Vitiligo biobank: data recording, storage and management  Integrated solution for data recording, collection and storageü data entry and analysisü datasets selection based on pre-set parameters (virtual patient enrollment)ü biosample availability informationü ensuring high compliance of the physician
  20. 20. Vitiligo biobank: data recording, storage and management   Database and more... Cloudy: a system providing capabilities for…ü data storage in searchable and analyzable formatü dynamic database field updatesü entering and storage of non-tabulated data such as text and imagesü network access (with later local versions synchronized with database to be released)... and more for physician & patient!
  21. 21. Biobank: attracting physicians   Cloudy system: merging data collection (research area) with capabilities foreasy and robust tracing of patients disease conditions and treatment response
  22. 22. Biobank: attracting physicians   Features:ü Electronic medical record tuned up for vitiligoü Visit schedulingü One-click frequently used treatment protocol additionü Visualization of selected parameters in a time scale
  23. 23. Vitiligo biobank today: overview  Six locations worldwide operating now, several tojoin shortlyMore than 650 datasets were acquired since thebeginning of operation in July 2012Cloudy smart interface and data collection electronicsystem to be released soon
  24. 24. Welcome to join Vitiligo biobank :in networking, research projects, funding  
  25. 25. Thank you for your attention !   www.vrfounda/on.org   Web:  vi/ligobiobank.org  Email:  biobank@vrfounda/on.org        

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