ACSQHC-ARCR-320

The Neonatal Alloimmune Thrombocytopenia (NAIT) Registry is a register of women who develop or have a history of NAIT, and their children, both before and after birth. The registry captures data on the presentation, treatment and clinical outcomes of this rare condition.

Individual NAIT patients require considerable support, with high diagnostic needs and high transfusion requirements, often with special products. The NAIT registry was established to address evidence gaps in the treatment, management and outcome of Australian NAIT cases, and to support hypothesis-driven research in this area.

Patients who have been diagnosed with (and/or managed as suspected) NAIT are eligible for inclusion in the registry. They may be identified by treating clinicians from participating hospitals or registry staff, or based on laboratory data provided by the Australian Red Cross Blood Service. Patients may also identify themselves to the registry. Patients are not excluded unless they choose to ‘opt-off’ the registry, as explained in the study brochure and opt-off information.

Routinely collected information in the diagnosis and treatment of NAIT is entered into a web-based data collection form. Clinical data collection is undertaken by clinicians and some laboratory data by the Blood Service. Data management and analysis is undertaken by the Monash University Department of Epidemiology and Preventive Medicine.