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“Working with the web-database and Biobanking” MEDICEL meeting 2011 Bologna. April 5 2011 Jose Ramon Bilbao.

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Presentation on theme: "“Working with the web-database and Biobanking” MEDICEL meeting 2011 Bologna. April 5 2011 Jose Ramon Bilbao."— Presentation transcript:

1 “Working with the web-database and Biobanking” MEDICEL meeting 2011 Bologna. April 5 2011 Jose Ramon Bilbao

2 The MediCel database… a newborn project http//medicel.sedyne.org

3 The MediCel database… a newborn project http//medicel.sedyne.org it needs to grow

4 The MediCel database… a newborn project http//medicel.sedyne.org request for access…

5 The MediCel database… a newborn project http//medicel.sedyne.org type your country

6 The MediCel database… a newborn project http//medicel.sedyne.org type your name

7 The MediCel database… a newborn project http//medicel.sedyne.org type your name

8 The MediCel database… a newborn project http//medicel.sedyne.org type your name you can only do two things now…

9 The MediCel database… a newborn project http//medicel.sedyne.org type your name

10 The MediCel database… a newborn project http//medicel.sedyne.org

11 The MediCel database… a newborn project http//medicel.sedyne.org This is an anonymous database Samples are coded: country_XX This is an anonymous database Samples are coded: country_XX

12 The MediCel database… a newborn project http//medicel.sedyne.org This is an anonymous database Samples are coded: country_XX This is an anonymous database Samples are coded: country_XX You should have your code safe with you country_XX = patient ID You should have your code safe with you country_XX = patient ID

13 The MediCel database… a newborn project http//medicel.sedyne.org This is an anonymous database Samples are coded: country_XX This is an anonymous database Samples are coded: country_XX This will be important for follow-up… You should have your code safe with you country_XX = patient ID You should have your code safe with you country_XX = patient ID

14 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory!

15 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary?

16 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check

17 The MediCel database… a newborn project http//medicel.sedyne.org

18 The MediCel database… a newborn project http//medicel.sedyne.org is age at Dx enough? …but are they necessary? …will check “Lab” results

19 The MediCel database… a newborn project http//medicel.sedyne.org is age at Dx enough? …but are they necessary? …will check Should add rapid test (+/-)? Should add rapid test (+/-)?

20 The MediCel database… a newborn project http//medicel.sedyne.org is age at Dx enough? …but are they necessary? …will check Biological material

21 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Is this realistic? Fixed? Frozen? Slide? Paraffin block? Fixed? Frozen? Slide? Paraffin block?

22 The MediCel database… a newborn project http//medicel.sedyne.org Or should we share “image files” with consultant pathologists Or should we share “image files” with consultant pathologists

23 The MediCel database… a newborn project http//medicel.sedyne.org Or should we share “image files” with consultant pathologists Or should we share “image files” with consultant pathologists we are implementing an image repository to upload images for training and for consultation

24 The MediCel database… a newborn project http//medicel.sedyne.org Or should we share “image files” with consultant pathologists Or should we share “image files” with consultant pathologists we are implementing an image repository to upload images for training and for consultation we need them!!

25 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Are we going to “store/share”?

26 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Are we going to “store/share”? CELI-BANK …what for?

27 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Are we going to “store/share”? CELI-BANK …what for? RESEARCH!

28 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Are we going to “store/share”? CELI-BANK …what for? RESEARCH! and…

29 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! …but are they necessary? Confirm rapid tests unclear results Confirm rapid tests unclear results Reference Laboratory

30 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Genetic studies?

31 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Provide HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? Provide affordable HLA testing Provide affordable HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8

32 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Provide HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? Provide affordable HLA testing Provide affordable HLA testing DNAbank

33 The MediCel database… a newborn project http//medicel.sedyne.org All fields are (*) compulsory! is age at Dx enough? …but are they necessary? …will check Provide HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? Provide affordable HLA testing Provide affordable HLA testing Or should we share “image files” with consultant pathologists Or should we share “image files” with consultant pathologists Could these two ideas be the basis for a collaborative project? Could these two ideas be the basis for a collaborative project?

34 The MediCel database… a newborn project http//medicel.sedyne.org is age at Dx enough? …but are they necessary? …will check Provide HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? symptoms/signs

35 The MediCel database… a newborn project http//medicel.sedyne.org is age at Dx enough? …but are they necessary? …will check Provide HLA testing SNP-based DQ2.5 DQ2.2 DQ8 SNP-based DQ2.5 DQ2.2 DQ8 other genetic studies? symptoms/signs are we happy?

36 The MediCel database… a newborn project http//medicel.sedyne.org symptoms/signs are we happy?

37 The MediCel database… a newborn project http//medicel.sedyne.org symptoms/signs are we happy?

38 The MediCel database… a newborn project http//medicel.sedyne.org symptoms/signs are we happy? …let us know

39 The MediCel database… a newborn project http//medicel.sedyne.org

40 The MediCel database… a newborn project http//medicel.sedyne.org

41 The MediCel database… a newborn project http//medicel.sedyne.org 544 patients!

42 The MediCel database… a newborn project http//medicel.sedyne.org 544 patients! 270 w/out HLA typing!

43 The MediCel database… a newborn project http//medicel.sedyne.org 544 patients! 270 w/out HLA typing! …should we?

44 The MediCel database… what next? http//medicel.sedyne.org type your name …we want to do more than just two things

45 The MediCel database… what next? http//medicel.sedyne.org type your name …we want to do more than just two things

46 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD - confirmed? - doubtful?

47 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD - confirmed? - doubtful? seek help from the “experts” …through the database seek help from the “experts” …through the database

48 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD 2.- Query/filter/modify patient data

49 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD 2.- Query/filter/modify patient data 3.- Insert follow-up information - associated diseases - re-testing of TGA - re-byopsying

50 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD 2.- Query/filter/modify patient data 3.- Insert follow-up information 4.- Enable uploading/viewing of images linked to patient data

51 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD- confirmed? y/n 2.- Query/filter/modify patient data 3.- Insert follow-up information 4.- Enable uploading/viewing of images linked to patient data

52 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD 2.- Query/filter/modify patient data 3.- Insert follow-up information 4.- Enable uploading/viewing of images 5.- “Memo” field to share comments

53 The MediCel database… what next? http//medicel.sedyne.org type your name 1.- Diagnosis of CD 2.- Query/filter/modify patient data 3.- Insert follow-up information 4.- Enable uploading/viewing of images 5.- “Memo” field to share comments and even more!... just ask galder.gutierrez@gmail.com

54 Potential R+D Projects in MediCel

55 1.Impact of Information Technologies for diagnosis and follow-up of CD patients Establish a network of “consultants” Pathology Immunology Gastroenterology… … working through the MediCel web-database

56 Potential R+D Projects in MediCel 1.Impact of Information Technologies for diagnosis and follow-up of CD patients Establish a network of “consultants” Pathology Immunology Gastroenterology… … working through the MediCel web-database 2.Validation of affordable technologies for lab testing in CD a) Retyping of HLA using proxy SNPs to validate in our populations Set up a reference lab/protocol for typing of new cases w/ SNPs Sharing of DNA samples (saliva, blood spots…) b) Evaluate the performance of point-of-care methods in our setting Set up a reference lab/protocol for validation assays Sharing of serum samples c) Creation of a BIOBANK through these projects

57 Potential R+D Projects in MediCel 1.Impact of Information Technologies for diagnosis and follow-up of CD patients Establish a network of “consultants” Pathology Immunology Gastroenterology… … working through the MediCel web-database 2.Validation of affordable technologies for lab testing in CD a) Retyping of HLA using proxy SNPs to validate in our populations Set up a reference lab/protocol for typing of new cases w/ SNPs Sharing of DNA samples (saliva, blood spots…) b) Evaluate the performance of point-of-care methods in our setting Set up a reference lab/protocol for validation assays Sharing of serum samples c) Creation of a BIOBANK through these projects

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