USTMA

Participate in Research

For patients & families

Help shape the future of TMA care.

Research can help investigators understand how TMA presents, how it changes over time, and which approaches may improve outcomes. Participation is always voluntary.

What am I being asked to do?

Each study should clearly explain visits, surveys, samples, records, or other activities before you decide whether to participate.

Will my information be private?

Research teams should explain how information is protected and what may be shared for approved research.

Can I change my mind?

Study-specific consent materials explain your rights, including whether and how you may withdraw.

Current opportunities

USTMA studies

Availability and eligibility vary by site. Contact the study team for current information.

Active registry

P200 Registry & Tissue Bank

P200

A prospective longitudinal clinical registry and biobank supporting multicenter iTTP research across the USTMA network.

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Multicenter cohort study

NeST — Neurologic Sequelae of iTTP

NeST

A multicenter study evaluating long-term neurologic, cognitive, quality-of-life, and patient-reported outcomes after acute iTTP.

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Retrospective registry

R300 — Retrospective Pediatric TTP Registry

R300

A retrospective registry studying pediatric immune and congenital TTP using clinical and treatment data from participating institutions.

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Retrospective study / development

R400 — Complement-Mediated TMA Study

R400

A multicenter retrospective study focused on presentation, management, and short- and long-term outcomes in complement-mediated TMA.

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Locked dataset / available for analyses

R100 — Retrospective Adult iTTP Registry

R100

A completed retrospective adult iTTP registry that serves as a resource for approved secondary analyses and publications.

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Research development

Prospective TMA Registry

Prospective TMA Registry

A prospective research concept designed to collect standardized longitudinal clinical data and biospecimens across TMA populations.

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