Follow disease course and outcomes over time.
USTMA Research
Research built for questions that are too rare for one center to answer alone.
USTMA connects patients, investigators, clinical sites, longitudinal data and biospecimens so that TMA research can move farther and faster.
Why a network matters
Rare conditions need shared infrastructure.
No single center sees enough patients with every TMA condition to answer all of the questions that matter. USTMA brings data, samples, clinical expertise and lived experience together across institutions.
Combine experience across TMA referral centers.
Connect clinical information with biologic samples and biomarkers.
Study library
Explore USTMA research.
Study status and site availability can change. Individual study pages provide the most current information entered in WordPress.
Prospective & longitudinal research
NeSTMulticenter cohort study
NeST — Neurologic Sequelae of iTTP
Adult iTTP survivors
A multicenter study evaluating long-term neurologic, cognitive, quality-of-life, and patient-reported outcomes after acute iTTP.
View study →P200Active registry
P200 Registry & Tissue Bank
Immune TTP (iTTP)
A prospective longitudinal clinical registry and biobank supporting multicenter iTTP research across the USTMA network.
View study →Prospective TMA RegistryResearch development
Prospective TMA Registry
Children and adults with TMA
A prospective research concept designed to collect standardized longitudinal clinical data and biospecimens across TMA populations.
View study →Retrospective research & analysis resources
R100Locked dataset / available for analyses
R100 — Retrospective Adult iTTP Registry
Adults with iTTP
A completed retrospective adult iTTP registry that serves as a resource for approved secondary analyses and publications.
View study →R300Retrospective registry
R300 — Retrospective Pediatric TTP Registry
Pediatric iTTP and cTTP
A retrospective registry studying pediatric immune and congenital TTP using clinical and treatment data from participating institutions.
View study →R400Retrospective study / development
R400 — Complement-Mediated TMA Study
Children and adults with CM-TMA
A multicenter retrospective study focused on presentation, management, and short- and long-term outcomes in complement-mediated TMA.
View study →Flagship research infrastructure
P200 Registry & Tissue Bank
P200 is a prospective longitudinal iTTP registry and biobank designed to support collaborative research using clinical information and biological samples contributed across participating USTMA sites.
P200 registry snapshot
Research powered by a connected TMA community.
P200 brings longitudinal clinical information together across the USTMA network so investigators can ask better questions and build better studies.
323Participants enrolled
353Acute iTTP episodes captured
19Participating centers
276Participants with ADAMTS13 data
Current snapshot from the supplied USTMA-P200 registry dashboard.Aggregated, de-identified data. Counts may be suppressed when needed to protect participant confidentiality.
Choose your path
Research looks different depending on why you are here.
Patients & familiesLearn about participating in research.What participation means, current opportunities and questions to ask →InvestigatorsBuild a study with the USTMA network.Collaboration, sites, data, biospecimens and research support →EvidenceSee what the network has produced.Publications, abstracts and scientific output →