Advantages of participating

In case one of your patients experienced or experiences acute or subacute onset of symptoms related to TTP, was diagnosed and is treated for TTP, or is suspected for hereditary TTP, you are very welcome to contact us and find out about the advantages of joining the Hereditary TTP Registry study.

Your participation as site collaborator and enrolment of your patient(s) and their family members will help to achieve our main goal of the Registry study, which is to gain an increased understanding of the clinical presentation and disease course in hereditary TTP. The long term aim is to develop recommendations on therapies and prevention for affected patients (see more under https://clinicaltrials.gov).

One of the advantages of joining the Registry is that enrolment of your patient(s) and their family members includes a genetic screening to confirm diagnosis of hereditary TTP. We will cover expenses for transport of blood samples to our laboratory, we will perform the assessments, explain the findings, and help entering data into the registry.

To have your patient(s) and their family members enrolled into the Registry, they need to be informed and agree to be enrolled. The participant information to clarify about the Registry and the informed consent form to be signed can be found under Participant information & Consent forms. In addition, you will have to obtain approval (from a local Ethics Committee or Institutional Review Board (IRB)) to participate in the study. We are happy to assist you as much as we can.

We are also available to answer any of your questions about hereditary TTP, diagnosis/treatment related questions and similar.