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 collaborate with us you can:
- 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)
- send us biological samples following the appropriate protocol (pdf files)
Only tests deemed necessary on the basis of international guidelines and recent scientific evidence will beperformed.
The new guidelines of our center, enforced since October 1st, 2012, include the following:
- The shipment of samples of new patients needs to be discussed in advance with one of the doctors in our center, so that tests are carried out only when an actual clinical indication exists
- Plasmatic activity of ADAMTS13 will be the first test. Anti-ADAMTS13 will be searched for only in case of reduced ADAMTS13 activity, with rare exceptions. The dosage of ADAMTS13 antigen will no longer be routinely carried out.
Results will be faxed or will be sent via e-mail 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.