.German TTP-Registry (Thrombotic Thrombocytopenic Purpura)

Launched by JOHANNES GUTENBERG UNIVERSITY MAINZ · May 20, 2022

Keywords

ClinConnect Summary

The German TTP-Registry is a research study focused on a condition called Thrombotic Thrombocytopenic Purpura (TTP), which affects the blood's ability to clot properly. This study is looking to gather information from patients over 18 years old who have been diagnosed with either acquired or congenital TTP. Researchers want to understand how this condition develops, what triggers flare-ups, and how effective different treatments are. They hope this information will lead to better ways to diagnose and manage TTP in the future.

To participate, individuals must be diagnosed with TTP and able to provide consent, either personally or through a legal representative. The study is currently recruiting participants, and anyone who joins can expect to be monitored during their treatment for TTP, as well as during follow-up appointments to track their health over time. It's important to note that participants should be able to understand either German or English, as language barriers may prevent involvement in the study. This trial aims to help improve the understanding and care of TTP for all affected individuals.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Patients with clinically diagnosed acquired and congenital TTP regardless of gender, ethnicity, and comorbidities, over the age of 18.
• • Patients incapable to give consent, who are accompanied by a legal representative during admission to the study, after the written informed consent of the legal representative.
• • Written informed consent of the patient.
• Exclusion Criteria:
• • Patients who are not able to understand the German or English language.
• • Patients who are permanently unable to communicate and who are not accompanied by a legal representative.