The Thombotic Thrombocytopenic Purpura and Neonatal Alloimmune Thrombocytopenia Registries
Sharing information to build knowledge about rare blood diseases
Thrombotic thrombocytopenic purpura (TTP) and neonatal alloimmune thrombocytopenia (NAIT) are uncommon, but associated with significant morbidity and mortality.
Resource implications of management, including specialised blood product provision, are substantial and increasing.
In NAIT, questions exist regarding the role of screening, early intervention and optimal management.
In TTP, the application of diagnostic tests, management of relapsed or refractory disease, and role of emerging therapies remain undefined. No national data exist regarding incidence, current clinical practice and complications of disease and therapy in these conditions.
Lack of data has led to significant variation in practice, while disease rarity hampers definitive clinical trials. Clinical registries provide a means to aggregate clinical experience and provide data to inform management.
Two new registries have been established for these diseases through the collaboration of Monash University and ARCBS. Monash University’s Department of Epidemiology and Preventive Medicine has extensive registry experience and an established methodology and registry infrastructure. ARCBS provides clinical and laboratory transfusion expertise and specialised blood product support. An independent Steering Committee with clinical expert representation monitors each registry.
The aims of each registry are to;
- better define the incidence, natural history and clinical outcome of the condition
- provide information on the range of therapeutic strategies being employed in the treatment of patients
- explore factors influencing clinical outcomes
- better define optimal management of patients
- inform and inspire future research, and coordinate future national research
Patients are identified and registered by the treating clinician. Secure web-based data entry and a standardised data dictionary enable authorised users to report demographics, presentation, laboratory parameters, management (including complications) and outcomes to the registry databases.
Sharing information with participating clinicians and hospitals is a high priority. Regular reports regarding accrual and outcomes, including analyses of national, state and local incidence and management, will be provided by each registry.
These two new national registries for TTP and NAIT will provide information on incidence, natural history and current management of these conditions; improve clinical practice; and inform future prospective clinical trials in their respective areas.
You can participate in the clinical practice surveys by following these links: