{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T13:14:36Z","timestamp":1791378876010,"version":"4.3.2"},"reference-count":16,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,11,30]],"date-time":"2025-11-30T00:00:00Z","timestamp":1764460800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,11,30]],"date-time":"2025-11-30T00:00:00Z","timestamp":1764460800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Vox Sanguinis"],"published-print":{"date-parts":[[2026,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background and Objectives<\/jats:title>\n                    <jats:p>India, home to the largest population of patients with thalassaemia major (TM), has made notable progress in the care through the National Health Mission, National Rare Disease Registry and Thalassaemia Bal Sewa Yojana. This study aimed to assess the infrastructure, support systems and human resources across thalassaemia treatment centres in India to map current service availability and guide policy enhancements for its prevention and comprehensive management.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Materials and Methods<\/jats:title>\n                    <jats:p>A nationwide survey was conducted between January 2023 and March 2024 among centres managing TM. The survey was disseminated through professional groups, civil societies and non\u2010governmental organizations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Sixty\u2010eight centres participated (government 26, private 28, charitable 14). About 85% of patients were from low\u2010income families, highlighting the dependence on government support. Transfusion services with leukodepleted red cells were available in 97% of centres, with most maintaining adequate pre\u2010transfusion haemoglobin. Chelation service was accessible in the majority of centres, and 87% provided prenatal diagnostics. Bone marrow transplantation was offered in 60 centres and comprehensive care services in 58 centres. Despite free transfusions and chelation, monthly out\u2010of\u2010pocket costs ranged from Indian rupees (INR) \u20b9500 to \u20b916,000 (US$ 5.92\u2013189.49).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Government initiatives have expanded thalassaemia services and reduced financial barriers. Continued efforts to strengthen the national registry and unify policy frameworks will help ensure equitable access across all regions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/vox.70157","type":"journal-article","created":{"date-parts":[[2025,12,1]],"date-time":"2025-12-01T00:49:01Z","timestamp":1764550141000},"page":"289-297","source":"Crossref","is-referenced-by-count":4,"title":["Assessment of services for diagnosis, management and prevention of thalassaemia in India: The way forward"],"prefix":"10.1111","volume":"121","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7941-5641","authenticated-orcid":false,"given":"Nita","family":"Radhakrishnan","sequence":"first","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health (PGICH)  Noida, Delhi NCR India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jagdish","family":"Chandra","sequence":"additional","affiliation":[{"name":"Department of Pediatrics ESI Medical College  Faridabad Haryana India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mamta","family":"Manglani","sequence":"additional","affiliation":[{"name":"Comprehensive Thalassemia Care, Pediatric Hematology Oncology and BMT Center  Borivali Mumbai India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amita","family":"Trehan","sequence":"additional","affiliation":[{"name":"Pediatric Hematology Oncology, Advanced Pediatric Center, Post Graduate Institute of Medical Education and Research  Chandigarh India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. S.","family":"Arora","sequence":"additional","affiliation":[{"name":"National Thalassemia Welfare Society  New Delhi India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shobha","family":"Tuli","sequence":"additional","affiliation":[{"name":"Thalassemics India  New Delhi India"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,11,30]]},"reference":[{"key":"e_1_2_9_2_1","first-page":"17","volume-title":"Control and management of thalassemia and other hemoglobinopathies in the Indian subcontinent: synoptic views","author":"Chandy M","year":"2008"},{"key":"e_1_2_9_3_1","unstructured":"Prevention and control of hemoglobinopathies in India \u2013 thalassemias sickle cell disease and other variant hemoglobins. National Health Mission Guidelines on Hemoglobinopathies in India: Ministry of Health & Family Welfare Government of India.2016. Available from:https:\/\/nhm.gov.in\/images\/pdf\/programmes\/RBSK\/Resource_Documents\/Guidelines_on_Hemoglobinopathies_in%20India.pdf. Last accessed 22 Jun 2025."},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6904-2-3"},{"key":"e_1_2_9_5_1","volume-title":"ICMR\u2013NRROID. Rare Diseases Registry [Internet]","author":"Indian Council of Medical Research (ICMR)"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-019-00410-1"},{"key":"e_1_2_9_7_1","volume-title":"About Thalassemia Bal Sewa Yojana (TBSY) [Internet]","author":"Coal India Limited"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.4103\/jfmpc.jfmpc_2242_20"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eclinm.2024.102619"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPH.0000000000001573"},{"key":"e_1_2_9_11_1","volume-title":"Prevention of thalassaemias and other haemoglobin disorders: volume 1: principles [Internet]","author":"Petrou M","year":"2013"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/03630269.2021.2008958"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/03630269.2023.2167657"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12887-020-02160-3"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-017-0643-z"},{"key":"e_1_2_9_16_1","volume-title":"National Health Mission guidelines on hemoglobinopathies in India: prevention and control of hemoglobinopathies in India","author":"Government of India, Ministry of Health and Family Welfare","year":"2016"},{"key":"e_1_2_9_17_1","volume-title":"Evidence\u2010based IAP\u2010PHO guidelines for the diagnosis and management of thalassemia","author":"Indian Academy of Pediatrics, Paediatric Haematology Oncology Chapter","year":"2023"}],"container-title":["Vox Sanguinis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/vox.70157","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/vox.70157","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/vox.70157","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T02:07:31Z","timestamp":1773367651000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/vox.70157"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,30]]},"references-count":16,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,3]]}},"alternative-id":["10.1111\/vox.70157"],"URL":"https:\/\/doi.org\/10.1111\/vox.70157","archive":["Portico"],"relation":{},"ISSN":["0042-9007","1423-0410"],"issn-type":[{"value":"0042-9007","type":"print"},{"value":"1423-0410","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,30]]}}}