{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T08:05:33Z","timestamp":1789545933566,"version":"build-2803163510"},"reference-count":68,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T00:00:00Z","timestamp":1789516800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T00:00:00Z","timestamp":1789516800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Fanconi anemia (FA) is the most common inherited bone marrow failure syndrome. Iran, with a high rate of consanguineous marriage and considerable ethnic diversity, represents a high\u2010risk context for FA. We established the Iranian Fanconi Anemia Registry (IRFAR) to provide the first registry\u2010based description of FA in Iran.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Procedure<\/jats:title>\n                    <jats:p>IRFAR is a prospective national registry established in April 2021 at Tehran University of Medical Sciences (ethics code: IR.TUMS.MEDICINE.REC.1400.146). Diagnosis required chromosomal breakage testing and\/or molecular confirmation, reviewed by at least two board\u2010certified pediatric hematologist\u2013oncologists. Data were collected using a structured questionnaire covering demographic, perinatal, clinical, hematologic, and genetic domains.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      A total of 116 patients from 101 families were enrolled. The male\u2010to\u2010female ratio was 1.15:1 and the mean age at diagnosis was 6.1 years (SD 3.08). Parental consanguinity was present in 91.1% of families. Patients originated from 25 of Iran's 31 provinces, with the highest concentrations in Tehran, Fars, Isfahan, and Kerman. Persian (41.4%), Azari (25.0%), and Lur (14.7%) were the predominant ethnic groups. The most frequent congenital findings were skin pigmentation abnormalities (71.6%), short stature (55.2%), and upper limb anomalies (52.6%). Nearly half of the patients had undergone hematopoietic stem cell transplantation (HSCT). Four patients (3.4%) had malignancies at enrollment. Molecular data were available in 11 patients, with\n                      <jats:italic>FANCA<\/jats:italic>\n                      as the predominant complementation group (72.7%).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>IRFAR is the first national FA registry in Iran and among the earliest in the Middle East. The high consanguinity rate and geographic diversity highlight the need for expanded molecular testing, premarital genetic counseling, and multi\u2010center expansion.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/1545-5017.70656","type":"journal-article","created":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T07:37:19Z","timestamp":1789544239000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Establishing the First National Fanconi Anemia Registry in Iran: Clinical and Epidemiological Insights From 116 Patients"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8935-079X","authenticated-orcid":false,"given":"Amir Ali","family":"Hamidieh","sequence":"first","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-4835-3751","authenticated-orcid":false,"given":"Mina","family":"Mokaram Doost Delkhah","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"},{"name":"Children's Medical Center, Pediatric Center of Excellence Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-2629-1832","authenticated-orcid":false,"given":"Amirali","family":"Kalantari","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6838-2963","authenticated-orcid":false,"given":"Leila","family":"Jafari","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-4787-6923","authenticated-orcid":false,"given":"Hadis","family":"Soleimanzadeh","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9658-6354","authenticated-orcid":false,"given":"Zahra","family":"Karimizadeh","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; Tissue Research Institute Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aziz","family":"Eghbali","sequence":"additional","affiliation":[{"name":"Clinical Research Development Center of Aliasghar Hospital Iran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-4716-8655","authenticated-orcid":false,"given":"Mohammadreza","family":"Bordbar","sequence":"additional","affiliation":[{"name":"Hematology Research Center Shiraz University of Medical Sciences  Shiraz Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saeed","family":"Yousefian","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, School of Medicine Isfahan University of Medical Sciences  Isfahan Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pouria","family":"Salajegheh","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Hematology and Oncology, Endocrinology and Metabolism Research Center Kerman University of Medical Sciences  Kerman Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Babak","family":"Abdolkarimi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Hakim Children Hospital Tehran University of Medical Sciences  Tehran Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Afshin","family":"Fathi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Ardabil University of Medical Sciences  Ardabil Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-6842-7444","authenticated-orcid":false,"given":"Atieh","family":"Karimzadeh","sequence":"additional","affiliation":[{"name":"Pediatric Cell and Gene Therapy Research Center, Gene, Cell &amp; 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