9001: Initiation of a cohort to define pathogenic Mechanisms, Precision diagnosis And Complications of Thrombotic Microangiopathies

Background

The IMPACT study is a research study for people with thrombotic microangiopathies (TMAs), including immune thrombotic thrombocytopenic purpura (iTTP), congenital thrombotic thrombocytopenic purpura (cTTP), and complement-mediated TMA (CM-TMA, also called atypical hemolytic uremic syndrome or aHUS). TMAs are rare conditions that can affect the blood and organs, including the brain, heart, and kidneys. The study was created to better understand the long-term effects of these conditions and to identify factors linked to relapse, organ injury, and long-term health outcomes.

The study will also collect blood samples and other health information to help researchers learn more about disease mechanisms, improve diagnosis, and support future treatment development. For some participants, the study also includes an optional Brain Health sub-study focused on cognitive function and the risk of big and small strokes.

About This Study

IMPACT is a multi-site, prospective, longitudinal cohort study taking place at academic medical centers across the United States. The study plans to enroll approximately 800 children and adults with TMA: about 500 with immune TTP, 100 with congenital TTP, and 200 with complement-mediated TMA (or aHUS). Participants will be followed over time through annual study visits.

Target Enrollment

800 participants

What will happen if I join?

If you join the study, you will have a study visit at least once a year that includes:

• Review of your medical history and medications
• Blood sample collection for research
• Questionnaires about health and quality of life

Some participants may also be invited to join an optional Brain Health substudy, which includes:

• Cognitive testing (about 45 minutes)
• Brain MRI without contrast

Who can participate?

You may be eligible if you:

• Have a diagnosis of immune TTP, congenital TTP, or complement-mediated TMA (aHUS)
• Are willing and able to take part in study procedures
• Are willing and able to provide consent or assent, if applicable

How to participate

To participate, please contact the study coordinator or principal investigator of any of the participating institutions by phone or by email. Please use the information to the right to inquire about participation. You may also contact the overall Project Manager, who can direct you to the closest study site.

Project Manager: Alex Walker

Email: awalke65@jh.edu

Phone: 410-614-9604