Table 2. Structures of the identified thalassemia registries.

Registry	Type	Year	Funding	Objectives of registry	Disease Coverage	Language	Participation
ETR Mazandaran	Regional	2016	Thalassemia Research Center, Uni	Improving diagnosis, Research, Decision making	Thalassemia major	Persian	Voluntary
NTR	National	1992	Gov	Management of control programs,follow- up, Prevention, Counseling and Screening	Thalassemia major	Unknown	Voluntary
National Register of Symptomatic Hemoglobinopathies	National	2000	Gov	Improving diagnosis, Control of blood disorders, Research	Thalassemia major, Sickle cell	English	Voluntary
Pediatric Non-Malignant Blood Disorders Registry	National	2008	Gov	Management of control programs, Follow-up, Improving diagnosis	Thalassemia major, Sickle cell	Arabic	Voluntary
NRPTB	National	2009	Gov	Improving diagnosis, Follow-up, Prevention, Policy making, Research, Compare management practices	Thalassemia major,Intermedia	Bulgarian	Voluntary
NHR	National	2009	Gov	Improving care, Management of control programs, Prevention, Research	Thalassemia major, Sickle cell	English	Voluntary
EHR	Multi national	2004	Public	Improving diagnosis, Follow-up, Prevention, Research, Planning	Thalassemia major, Otherhemoglobinopathy	English	Voluntary
Register of Thalassemic Patients in France	National	2005	Gov	Improving care, Compare conventional treatment, Research	Thalassemia major, Intermedia	French	Voluntary
HTA-Thal	National	2008	Gov,Fondazione Giambrone	Improving diagnosis, Management of control programs, Healthcare planning,Research	Thalassemia major	Italian	Voluntary
ReSTE	Regional	1984	Gov	Management of control programs, Care Planning, Research	Thalassemia major, Intermedia, Sickle cell, Other hemoglobinopathy	Italian	Voluntary
NRHG	National	2009	Private	Improving care, Monitor treatment, Prevention, Research	Thalassemia, Sickle cell, Hemoglobin lepore	Greek	Voluntary
REPHem	National	2014	Industrial Association	Improving diagnosis, Improve Treatment, Prevention, Research,Comparison with other registries	Thalassemia major, Intermedia, Sickle cell	Spanish	Voluntary
Turkish Hemoglobinopathy Registry	National	2012	Gov. Uni	Improving diagnosis, Management of control programs, Research	Thalassemia major, Intermedia, Sickle cell	Turkish	Voluntary
RuSH	National	2010	Gov	Improving care, Monitoring health care utilization and clinical outcomes, Planning, Research, education	Thalassemia, Sickle cell	English	Voluntary
DISH	National	2014	Gov	Management of control programs, Research, Improving care	Thalassemia ,Sickle cell, Other Hemoglobinopathies	English	Voluntary
HbR	National	2014	Industry partners	Improving diagnosis, Follow-up, Research, Monitoring outcomes	Thalassemia major, Sickle cell, Other haemoglobinopathies	English	Voluntary