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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 250 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) |
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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. |
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