“ working with the web-database and biobanking ” medicel meeting 2011 bologna. april 5 2011

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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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“ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011 . Jose Ramon Bilbao. The MediCel database… a newborn project http//medicel.sedyne.org. The MediCel database… a newborn project http//medicel.sedyne.org. it needs to grow . - PowerPoint PPT Presentation

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Page 1: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

“Working with the web-database andBiobanking”

MEDICEL meeting 2011Bologna. April 5 2011

Jose Ramon Bilbao

Page 2: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Page 3: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

it needs to grow

Page 4: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

request for access…

Page 5: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

type your country

Page 6: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

type your name

Page 7: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

type your name

Page 8: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

type your name

you can only do two things now…

Page 9: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

type your name

Page 10: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Page 11: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

This is an anonymous databaseSamples are coded: country_XX

Page 12: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

This is an anonymous databaseSamples are coded: country_XX

You should have your code safe with youcountry_XX = patient ID

Page 13: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

This is an anonymous databaseSamples are coded: country_XX

This will be important for follow-up…

You should have your code safe with youcountry_XX = patient ID

Page 14: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

Page 15: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

Page 16: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will check

Page 17: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Page 18: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

is age at Dx enough?

…but are they necessary?

…will check

“Lab” results

Page 19: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

is age at Dx enough?

…but are they necessary?

…will checkShould addrapid test (+/-)?

Page 20: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

is age at Dx enough?

…but are they necessary?

…will check

Biological material

Page 21: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//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?

Page 22: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Or should we share “image files” with

consultant pathologists

Page 23: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Or should we share “image files” with

consultant pathologists

we are implementing an image repository to upload images for training and for consultation

Page 24: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

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!!

Page 25: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkAre we going to “store/share”?

Page 26: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkAre we going to “store/share”?

CELI-BANK

…what for?

Page 27: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkAre we going to “store/share”?

CELI-BANK

…what for?

RESEARCH!

Page 28: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkAre we going to “store/share”?

CELI-BANK

…what for?

RESEARCH! and…

Page 29: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

…but are they necessary?Confirm rapid testsunclear results

Reference Laboratory

Page 30: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkGenetic studies?

Page 31: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkProvide HLA testing

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?

Provide affordableHLA testing

SNP-basedDQ2.5DQ2.2DQ8

Page 32: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkProvide HLA testing

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?Provide affordable

HLA testing

DNAbank

Page 33: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will checkProvide HLA testing

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?

Provide affordableHLA testing

Or should we share “image files” with

consultant pathologistsCould these two ideas be the basis for a

collaborative project?

Page 34: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

is age at Dx enough?

…but are they necessary?

…will checkProvide HLA testing

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?symptoms/signs

Page 35: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

is age at Dx enough?

…but are they necessary?

…will checkProvide HLA testing

SNP-basedDQ2.5DQ2.2DQ8

other genetic studies?symptoms/signs

are we happy?

Page 36: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

symptoms/signs

are we happy?

Page 37: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

symptoms/signs

are we happy?

Page 38: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

symptoms/signs

are we happy?

…let us know

Page 39: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Page 40: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

Page 41: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

544 patients!

Page 42: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

544 patients!

270 w/out HLA typing!

Page 43: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… a newborn projecthttp//medicel.sedyne.org

544 patients!

270 w/out HLA typing! …should we?

Page 44: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name

…we want to do more than just two things

Page 45: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name

…we want to do more than just two things

Page 46: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD

- confirmed? - doubtful?

Page 47: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD

- confirmed? - doubtful?

seek help from the “experts”…through the database

Page 48: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD2.- Query/filter/modify patient data

Page 49: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD2.- Query/filter/modify patient data3.- Insert follow-up information

- associated diseases- re-testing of TGA- re-byopsying

Page 50: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD2.- Query/filter/modify patient data3.- Insert follow-up information4.- Enable uploading/viewing of images

linked to patient data

Page 51: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD - confirmed? y/n2.- Query/filter/modify patient data3.- Insert follow-up information4.- Enable uploading/viewing of images

linked to patient data

Page 52: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD2.- Query/filter/modify patient data3.- Insert follow-up information4.- Enable uploading/viewing of images5.- “Memo” field to share comments

Page 53: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

The MediCel database… what next?http//medicel.sedyne.org

type your name1.- Diagnosis of CD2.- Query/filter/modify patient data3.- Insert follow-up information4.- Enable uploading/viewing of images5.- “Memo” field to share comments

and even more!... just ask [email protected]

Page 54: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

Potential R+D Projects in MediCel

Page 55: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

Potential R+D Projects in MediCel1. Impact of Information Technologies for diagnosis and follow-up

of CD patientsEstablish a network of “consultants”

PathologyImmunologyGastroenterology…

… working through the MediCel web-database

Page 56: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

Potential R+D Projects in MediCel1. Impact of Information Technologies for diagnosis and follow-up

of CD patientsEstablish a network of “consultants”

PathologyImmunologyGastroenterology…

… working through the MediCel web-database

2. Validation of affordable technologies for lab testing in CDa) Retyping of HLA using proxy SNPs to validate in our populations

Set up a reference lab/protocol for typing of new cases w/ SNPsSharing of DNA samples (saliva, blood spots…)

b) Evaluate the performance of point-of-care methods in our settingSet up a reference lab/protocol for validation assaysSharing of serum samples

c) Creation of a BIOBANK through these projects

Page 57: “ Working with the web-database and Biobanking ” MEDICEL meeting 2011 Bologna. April 5 2011

Potential R+D Projects in MediCel1. Impact of Information Technologies for diagnosis and follow-up

of CD patientsEstablish a network of “consultants”

PathologyImmunologyGastroenterology…

… working through the MediCel web-database

2. Validation of affordable technologies for lab testing in CDa) Retyping of HLA using proxy SNPs to validate in our populations

Set up a reference lab/protocol for typing of new cases w/ SNPsSharing of DNA samples (saliva, blood spots…)

b) Evaluate the performance of point-of-care methods in our settingSet up a reference lab/protocol for validation assaysSharing of serum samples

c) Creation of a BIOBANK through these projects