“ 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. 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

Transcript of “ 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

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

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

it needs to grow

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

request for access…

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

type your country

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

type your name

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

type your name

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

type your name

you can only do two things now…

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

type your name

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

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

This is an anonymous databaseSamples are coded: country_XX

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

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

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

All fields are (*) compulsory!

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

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

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

All fields are (*) compulsory!

is age at Dx enough?

…but are they necessary?

…will check

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

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

is age at Dx enough?

…but are they necessary?

…will check

“Lab” results

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

is age at Dx enough?

…but are they necessary?

…will checkShould addrapid test (+/-)?

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

is age at Dx enough?

…but are they necessary?

…will check

Biological material

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?

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

Or should we share “image files” with

consultant pathologists

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

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!!

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”?

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?

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!

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…

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

All fields are (*) compulsory!

…but are they necessary?Confirm rapid testsunclear results

Reference Laboratory

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?

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

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

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?

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

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?

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

symptoms/signs

are we happy?

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

symptoms/signs

are we happy?

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

symptoms/signs

are we happy?

…let us know

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

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

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

544 patients!

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

544 patients!

270 w/out HLA typing!

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

544 patients!

270 w/out HLA typing! …should we?

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

type your name

…we want to do more than just two things

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

type your name

…we want to do more than just two things

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

type your name1.- Diagnosis of CD

- confirmed? - doubtful?

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

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

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

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

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

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

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

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 galder.gutierrez@gmail.com

Potential R+D Projects in MediCel

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

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

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