“working with the web-database and biobanking” medicel meeting 2011 bologna. april 5 2011 jose...
TRANSCRIPT
“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_XXThis 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_XXThis is an anonymous databaseSamples are coded: country_XX
You should have your code safe with youcountry_XX = patient ID
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_XXThis is an anonymous databaseSamples are coded: country_XX
This will be important for follow-up…This will be important for follow-up…
You should have your code safe with youcountry_XX = patient ID
You should have your code safe with youcountry_XX = patient ID
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…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?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will check
“Lab” results“Lab” results
The MediCel database… a newborn projecthttp//medicel.sedyne.org
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkShould addrapid test (+/-)?
Should addrapid test (+/-)?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will check
Biological material
Biological material
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will check
Is this realistic?Is this realistic?
• Fixed?• Frozen?• Slide?• Paraffin block?
• Fixed?• Frozen?• Slide?• Paraffin block?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
Or should we share “image files” with
consultant pathologists
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
Or should we share “image files” with
consultant pathologists
we are implementing an image repository to upload images for training and for consultation
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
Or should we share “image files” with
consultant pathologists
we are implementing an image repository to upload images for training and for consultation
we are implementing an image repository to upload images for training and for consultation
we need them!!we need them!!
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkAre we going to “store/share”? Are we going to “store/share”?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkAre we going to “store/share”? Are we going to “store/share”?
CELI-BANKCELI-BANK
…what for?…what for?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkAre we going to “store/share”? Are we going to “store/share”?
CELI-BANKCELI-BANK
…what for?…what for?
RESEARCH!
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkAre we going to “store/share”? Are we going to “store/share”?
CELI-BANKCELI-BANK
…what for?…what for?
RESEARCH! and…
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
…but are they necessary?…but are they necessary?
Confirm rapid testsunclear results
Confirm rapid testsunclear results
Reference Laboratory Reference Laboratory
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkGenetic studies?Genetic studies?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkProvide HLA testingProvide HLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?
Provide affordableHLA testing
Provide affordableHLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkProvide HLA testingProvide HLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?Provide affordableHLA testing
Provide affordableHLA testing
DNAbankDNAbank
The MediCel database… a newborn projecthttp//medicel.sedyne.org
All fields are (*) compulsory!All fields are (*) compulsory!
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkProvide HLA testingProvide HLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?
Provide affordableHLA testing
Provide affordableHLA testing
Or should we share “image files” with
consultant pathologists
Or should we share “image files” with
consultant pathologistsCould these two ideas be the basis for a
collaborative project?Could these two ideas be the basis for a
collaborative project?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkProvide HLA testingProvide HLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?symptoms/signssymptoms/signs
The MediCel database… a newborn projecthttp//medicel.sedyne.org
is age at Dx enough?is age at Dx enough?
…but are they necessary?…but are they necessary?
…will checkProvide HLA testingProvide HLA testing
SNP-basedDQ2.5DQ2.2DQ8
SNP-basedDQ2.5DQ2.2DQ8
other genetic studies?other genetic studies?symptoms/signssymptoms/signs
are we happy?are we happy?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
symptoms/signssymptoms/signs
are we happy?are we happy?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
symptoms/signssymptoms/signs
are we happy?are we happy?
The MediCel database… a newborn projecthttp//medicel.sedyne.org
symptoms/signssymptoms/signs
are we happy?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
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 [email protected]
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