Liverpool AIHA Registry
Research type
Research Database
IRAS ID
325259
Contact name
David Simcox
Contact email
Research summary
Liverpool adult autoimmune haemolytic anaemia registry: investigating epidemiology, pathophysiology, associated conditions, treatment effectiveness and disease progression
REC name
North West - Haydock Research Ethics Committee
REC reference
25/NW/0288
Date of REC Opinion
27 Nov 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The main aim is to collect clinical information from participants with autoimmune haemolytic anaemia to investigate the epidemiology (how often the disease occurs in different groups), driving factors/causes, treatments and outcomes.
Basic demographics will be stored including age and gender assigned at birth. Laboratory and clinical data including results from bloods tests, treatments and response to treatment, complications of disease/treatments as well as transfusions received will be collected.
Patient-related outcome measures including health-related quality of life and psychological wellbeing will also be included.
Follow-up data will be collected yearly at a minimum. Data will be entered into a secure REDCap database which will be hosted by the Trust sponsoring the study.
Research programme
The population being studied will be patients with a confirmed diagnosis of Autoimmune Haemolytic Anaemia (AIHA). AIHA is a rare but serious blood disorder, where red cell breakdown is caused by antibodies from the patient’s immune system targeting its own red cells. AIHA can be grouped into primary or secondary (related to a known associated disorder such as certain cancers of the lymph glands and infections). AIHA can also be divided depending on blood findings into warm type, cold type or mixed type AIHA. As such, the clinical features, severity and management of the condition varies considerably.
Research database title
Liverpool adult autoimmune haemolytic anaemia registry: investigating epidemiology, pathophysiology, associated conditions, treatment effectiveness and disease progression
Establishment organisation
Liverpool University Hospitals NHS Foundation Trust
Establishment organisation address
Prescot Street
Liverpool
L7 8XP