Table 3. Data collection onthe identified thalassemia registries.

Registry	Core minimum data set	Data sources	Data submission
ETR Mazandaran	Demographics, Clinical, Complications, Medication	Haemoglobinopathy centers	Web-based
NTR	Demographics, Clinical	Hospitals	On-line data transfer
National Register of Symptomatic Hemoglobinopathies	Administrative, Clinical	Hospitals, Tertiary care centers	Paper, On-line data transfer
Pediatric Non-Malignant Blood DisordersRegistry	Demographic, Consanguinity, Diagnostic, Laboratory	Hospitals, Haemoglobinopathy centers	Web-based
NRPTB	Demographic, Diagnostic, Mortality	Hospitals, Thalassemia centers	Web-based
NHR	Patient, Adverse Events, Annual Review	Treatment centers, other bodies such as blood and transplant centers	Web-based
EHR	Demographics, Clinical, Treatment, Laboratory	Hospitals, Haemoglobinopathy Centers	On-line data transfer
Register of Thalassemic Patients in France	Epidemiological, Clinical, Biological	Hospitals, Pediatric centers, stem cell transplants database	Web-based
HTA-Thal	Demographic,Clinical, Complications, Quality of life,Cost	Hospitals, Haemoglobinopathy centers	Web-based
ReSTE	Demographics,Clinical	Hospital, Haemoglobinopathy centers	Paper, fax
NRHG	Demographic, Disease	Hospitals, Haemoglobinopathy centers	Web-based
REPHem	Demographic, Clinical	Hospitals, Haemoglobinopathy centers	Web-based
Turkish Hemoglobinopathy Registry	Demographic, Disease	Hemoglobinopathy centers	Web-based
RuSH	Administrative, Clinical, Health care utilization	Haemoglobinopathy centers ,Public health records, Clinical records, registries	Paper, On-line data transfer
DISH	Demographic, Diagnostic, Hospitalizations, transfusions, Tests, Medication, Bone marrow transplant	Hospitals	Web-based
HbR	Demographics, Diagnosis, Laboratory , Complications, Clinical outcomes	Hospitals, Haemoglobinopathy centers, registries, Medical databases	On-line data transfer