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For several years our research group, composed
of hematologists, biologists, biotechnologists,
and technicians has investigated the physio-pathological
mechanisms of TTP in order to improve the diagnostic
and therapeutic approach for patients affected
with this disease. As TTP
is a rare illness, the collection, organization
and accurate statistical analysis of as much pertinent
clinical and laboratory data as possible will
help provide answers to unsolved problems related
to it. With this aim in mind, we
have created an international TTP database
including clinical, laboratory, genetic, and therapeutic
information on over 160
patients from all over the world. However,
this data is not yet statistically significant
to lead to definitive solutions.
This ambitious objective can be achieved by means
of collaboration among
clinics with the problem of managing TTP
patients as well as research
centres able to determine the factors involved
in the pathogenesis of TTP. To this end we've
invested our resources to obtain funding to cover
the service of free testing, especially for those
countries lacking this possibility. The tests
include:
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ADAMTS13 functional
activity |
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ADAMTS13 antigenic
level |
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presence/absence
of anti-ADAMTS13 antibody |
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presence/absence of
anti-ADAMTS13 inhibitor(anti-ADAMTS13 antibody
with neutralizing activity) |
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determination of the
mutation of the ADAMTS13 gene,
ONLY in suspected cases of congenital TTP |
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VWF antigenic level |
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evaluation of the multimeric
pattern of VWF |
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To collaborate
with us you can:
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send us clinical information
by filling out the Questionnaire ( 
pdf
files), accompanied by the signed (by the patient
or proxy) and completed form of informed consent
(
pdf
files) |
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send us biological samples
following the appropriate protocol (
pdf
files), the costs for running tests on
these samples are at our expense |
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| Results will be faxed
and the personal data of the patients will be safeguarded
with due respect for the law and fundamental liberty
of each individual, as stipulated in Italian D.
Lgs. N. 196 of June 30, 2003 -
"Protection
of Personal Data". |
Our research has been
approved by the Ethics Committee of the IRCCS Maggiore
Hospital, Mangiagalli and Regina Elena Foundation
as of March 5, 2005.
In the event that a patient's clinical data or informed
consent does not reach us, we will not be able to
proceed with the laboratory testing. |
