{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T10:13:22Z","timestamp":1789812802582,"version":"4.0.1"},"reference-count":29,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T00:00:00Z","timestamp":1781740800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T00:00:00Z","timestamp":1781740800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100027454","name":"Hemophilia Outreach Center","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100027454","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Rapid advancement of molecular genetics has transformed the diagnosis, treatment, and management of individuals with hereditary bleeding disorders. To provide effective, up\u2010to\u2010date genetic counselling, navigate the complexity of these conditions, and select appropriate molecular testing, genetics expertise is required.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>This study assessed the provision of genetic counselling services, involvement of genetic counsellors (GCs), and the perceived value of GCs within haemophilia treatment centres (HTCs) in the United States.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A survey was emailed to 396 HTC providers. Of these, 115 responses were received, representing 68 of 149 US HTCs (45.6% HTC participation rate). Responses were stratified by level of GC engagement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Although GCs have extensive training in genetics, genomics and counselling skills, nearly one\u2010third of respondents (34.9%,\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a038) reported that a GC is not involved with the HTC nor are referrals made. Almost all GC\u2010engaged respondents (98%,\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a022) and GC\u2010referral respondents (95%,\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a020) agreed that \u2018GCs have a unique skill set that is highly valuable to an HTC clinic\u2019 compared to only 62% (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a020) of non\u2010GC\u2010engaged respondents (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0=\u00a00.001). Additionally, respondents noted positive implications of integrating a GC within their HTCs, stating that GCs are \u2018ideal for optimal patient care\u2019.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>These results highlight the value of a GC within an HTC. This signifies the need to reassess the role of GCs among HTCs to reduce inconsistencies in provision of genetic counselling and increase healthcare equity.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70340","type":"journal-article","created":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T10:29:43Z","timestamp":1781778583000},"page":"1229-1238","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Utilisation and Perceived Value of Genetic Counsellors Within US Haemophilia Treatment Centres"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5810-9007","authenticated-orcid":false,"given":"Caylynn","family":"Carls","sequence":"first","affiliation":[{"name":"Joan H. Marks Graduate Program in Human Genetics  Bronxville New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1283-2010","authenticated-orcid":false,"given":"Sumedha","family":"Ghate","sequence":"additional","affiliation":[{"name":"Hemophilia Outreach Center  Green Bay Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7810-6038","authenticated-orcid":false,"given":"Stefanie N.","family":"Dugan","sequence":"additional","affiliation":[{"name":"Versiti  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5622-4423","authenticated-orcid":false,"given":"Radhika N.","family":"Sawh","sequence":"additional","affiliation":[{"name":"Joan H. Marks Graduate Program in Human Genetics  Bronxville New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9541-4852","authenticated-orcid":false,"given":"DeBran A.","family":"Tarver","sequence":"additional","affiliation":[{"name":"Hemophilia Federation of America  Washington District of Columbia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,6,18]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1179\/102453312x13336169156492"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.06.006"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.amepre.2014.07.040"},{"key":"e_1_2_13_5_1","unstructured":"National Bleeding Disorder Foundation Medical and Scientific Advisory Council (MASAC) Standards and Criteria for the Care of Persons With Congenital Bleeding Disorders(National Bleeding Disorder Foundation 2002)."},{"key":"e_1_2_13_6_1","unstructured":"National Hemophilia Foundation Medical and Scientific Advisory Council (MASAC) MASAC Document #269: Standards and Criteria for the Care of Persons With Congenital Bleeding Disorders 2022 https:\/\/www.bleeding.org\/healthcare-professionals\/guidelines-on-care\/masac-documents\/masac-document-269-standards-and-criteria-for-the-care-of-persons-with-congenital-bleeding-disorders."},{"key":"e_1_2_13_7_1","volume-title":"Genetic Counselling for Hemophilia, Revised Edition","author":"Alabek M.","year":"2015"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_13_9_1","unstructured":"National Hemophilia Foundation Medical and Scientific Advisory Council (MASAC) MASAC Document #273: Recommendations on Genotyping for Persons With Hemophilia 2022 https:\/\/www.bleeding.org\/healthcare-professionals\/guidelines-on-care\/masac-documents\/masac-document-273-recommendations-on-genotyping-for-persons-with-hemophilia."},{"key":"e_1_2_13_10_1","unstructured":"National Hemophilia Foundation Medical and Scientific Advisory Council (MASAC) MASAC Document #265: MASAC Guidelines for Pregnancy and Perinatal Management of Women With Inherited Bleeding Disorders and Carriers of Hemophilia A or B 2021 https:\/\/www.bleeding.org\/healthcare-professionals\/guidelines-on-care\/masac-documents\/masac-document-265-masac-guidelines-for-pregnancy-and-perinatal-management-of-women-with-inherited-bleeding-disorders-and-carriers-of-hemophilia-a-or-b."},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020003265"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2025016512"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rpth.2025.102686"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/jth.15484"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2023\u2010062850"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1172\/JCI20113"},{"key":"e_1_2_13_17_1","unstructured":"American Board of Genetic Counseling Inc. Mission Statement Purpose and Values 2021.https:\/\/www.abgc.net\/about\u2010abgc\/mission\u2010history\/."},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1164"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1170"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31607"},{"key":"e_1_2_13_21_1","unstructured":"Accreditation Council for Genetic Counseling Practice\u2010Based Competencies for Genetic Counselors 2019 https:\/\/www.gceducation.org."},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.1097\/PPO.0b013e3182609490"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010013\u20109605\u20103"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1097\/PPO.0000000000000391"},{"key":"e_1_2_13_25_1","unstructured":"National Society of Genetic Counselors Policy and Publications: Professional Status Survey 2021 https:\/\/www.nsgc.org\/p\/cm\/ld\/fid=68."},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10916\u2010016\u20100666\u20103"},{"key":"e_1_2_13_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2016.08.003"},{"key":"e_1_2_13_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.36453"},{"key":"e_1_2_13_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2018.11.014"},{"key":"e_1_2_13_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bvth.2024.100043"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70340","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hae.70340","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70340","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T09:41:45Z","timestamp":1789810905000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70340"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,18]]},"references-count":29,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10.1111\/hae.70340"],"URL":"https:\/\/doi.org\/10.1111\/hae.70340","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,18]]},"assertion":[{"value":"2026-01-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-08","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-18","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}