Acquired Thrombotic Thrombocytopenic Purpura and Neuropsychologic Complications
Research Aims of this Study:
"The purpose of this study is to determine why some patients have problems with thinking and emotional wellbeing after a diagnosis of TTP. Over the course of 2 years, participants in this study will perform tests of thinking, such as memory and reaction time, and answer questions about emotional health and quality of life, along with giving blood samples. We hope to learn why some patients with TTP have trouble with these problems and how they change over time, with the ultimate goal to prevent and treat these problems."
How did Dr. Mazepa become interested in TTP research:
"I became interested in TTP research because there is still so much to learned about how to best treat the disease, and, with that, a great opportunity to improve the lives of patients. Since 2014, I have been studying TTP with collaborators to better understand the disease and improve treatments. With this study, I look forward to better understanding how we can improve the quality of life for our patients when they are in remission and not just when they become ill and need treatment in the hospital."
How Dr. Mazepa believes this research will impact individuals living with or impacted by TTP:
"We hope that patients who participate in the study will have an opportunity to contribute to improving the lives of patients with TTP by helping us learn how their thinking and emotions are affected by the disease. We hope that in doing so, we can soon find treatments for these problems and improve everyone's experience with TTP."
Comments from Dr. Mazepa to donors:
"We are so very grateful to those donors who are supporting this research to improve the lives of patients with TTP and are very excited to get this work under way. We would like to thank the many donors for their contributions and to the AnsweringTTP Foundation for supporting this work."
Progress Update September 2022
"We are excited to announce that enrollment for this pilot study is now complete and the study will close at the end of 2022. Once our final analysis of the study is complete, we anticipate that we will have important new information on how a larger and longer-term study can be designed and implemented. We have tested several tools to measure the impact of TTP long-term. Some tests were very useful and others either not useful or burdensome and too time consuming to be used in a larger study. We are currently in the process of analysing blood samples to help us understand which of these could be useful disease markers in the future. We also found that frequent testing is not necessary because this is a slowly changing problem and we now think it would likely require a study of at least 5 years to see how these complications change over time. Ultimately, with the help of the Answering TTP foundation we have made important strides in understanding the long-term effects of TTP and how, ultimately, we can prevent and improve these complications of the disease."
September 20, 2021 Progress Update
"Survivors of iTTP often report problems with concentration, memory, and depressed mood. While this has been described in small groups of patients, little is known about how common these problems are, whether particular patients are more susceptible to these problems, and how these problems change over time. The goal of this project is better estimate how common these problems are, determine the best ways to measure them, how they change over time, and whether blood tests could predict them or better understand why these problems occur. Our goal is to measure thinking and mood in 50 participants with a history of iTTP over 2 years at 3 different US institutions. We have enrolled 29 participants at 3 sites, several of which have completed the full 2-year study. We will have a better estimate of how quickly these problems change over time by the end of the 2-year study. We also hope that with completion of this first phase of the study, we will be able to obtain future funds to open the study to more participants in more locations across the US." --- Dr. M. Mazepa