{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T16:51:10Z","timestamp":1791478270972,"version":"4.3.4"},"reference-count":17,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"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":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    Germline pathogenic variants in the\n                    <jats:italic>RUNX1<\/jats:italic>\n                    gene lead to the condition\n                    <jats:italic>RUNX1<\/jats:italic>\n                    \u2010familial platelet disorder (\n                    <jats:italic>RUNX1\u2010<\/jats:italic>\n                    FPD). This condition is associated with a 30%\u201350% lifetime risk of hematologic malignancies, including acute myeloid leukemia. In addition to physical manifestations including prolonged bleeding and easy bruising, individuals with\n                    <jats:italic>RUNX1<\/jats:italic>\n                    \u2010FPD face profound psychosocial challenges. Individuals 18\u201339\u2009years old may particularly struggle in their experiences with\n                    <jats:italic>RUNX<\/jats:italic>\n                    \u2010FPD as they navigate developmental milestones. This descriptive, cross\u2010sectional study includes participants aged 18\u201339, enrolled in the NIH RUNX1 Natural History Study (19\u2010HG\u20100059). Each participant completed a structured psychosocial self\u2010report assessment that included demographic factors, patient\u2010reported outcomes on mental health symptomatology, psychiatric treatment history, and traumatic stress symptomatology. Open\u2010ended questions asked participants to identify the most difficult part of living with\n                    <jats:italic>RUNX1<\/jats:italic>\n                    \u2010FPD and how\n                    <jats:italic>RUNX1<\/jats:italic>\n                    \u2010FPD has impacted their lives. Twenty\u2010two participants completed the measures and were included in the analyses. Participants' mean age was 31\u2009years (SD\u2009=\u20095.1). Fifty percent of participants reported higher than average anxiety scores, 59% reported they had been treated by a mental health professional, and 64% reported traumatic stress symptomatology. Living with the chronic uncertainty of cancer development and overall distress from recommended lifelong monitoring processes emerged as themes from the illustrative exemplar quotes. With this study, we describe the significant psychosocial and mental health challenges that emerging adults with\n                    <jats:italic>RUNX1<\/jats:italic>\n                    \u2010FPD face. Access to psychological counseling, peer support groups, and genetic counseling can help individuals process their risk, manage anxiety, and make informed decisions. More research is needed to explore effective coping strategies, resilience\u2010building techniques, and patient\u2010centered resources to improve quality of life for those living with a hereditary predisposition to hematologic malignancies.\n                  <\/jats:p>","DOI":"10.1002\/jgc4.70253","type":"journal-article","created":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T15:40:10Z","timestamp":1782920410000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Psychosocial aspects of\n                    <i>RUNX1<\/i>\n                    \u2010familial platelet disorder in adolescents and young adults: \u201cThe fear of knowing it could happen sometime down the road\u201d"],"prefix":"10.1002","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-5241-0094","authenticated-orcid":false,"given":"Olivia","family":"Kearns","sequence":"first","affiliation":[{"name":"Office of the Clinical Director, National Institute of Mental Health (NIMH) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0146-1162","authenticated-orcid":false,"given":"Natalie T.","family":"Deuitch","sequence":"additional","affiliation":[{"name":"Oncogenesis and Development Section, Translational and Functional Genomics Branch (TFGB), Division of Intramural Research, National Human Genome Research Institute (NHGRI) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen","family":"Craft","sequence":"additional","affiliation":[{"name":"Oncogenesis and Development Section, Translational and Functional Genomics Branch (TFGB), Division of Intramural Research, National Human Genome Research Institute (NHGRI) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David J.","family":"Young","sequence":"additional","affiliation":[{"name":"Translational Stem Cell Biology Branch, Division of Intramural Research, National Heart Lung, and Blood Institute (NHLBI) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul P.","family":"Liu","sequence":"additional","affiliation":[{"name":"Oncogenesis and Development Section, Translational and Functional Genomics Branch (TFGB), Division of Intramural Research, National Human Genome Research Institute (NHGRI) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9573-8870","authenticated-orcid":false,"given":"Lori","family":"Wiener","sequence":"additional","affiliation":[{"name":"Pediatric Oncology Branch (POB) Center for Cancer Research (CCR) National Cancer Institute (NCI) National Institutes of Health (NIH)  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,1]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.outlook.2014.05.009"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.2023019746"},{"key":"e_1_2_14_4_1","volume-title":"GeneReviews\u00ae","author":"Deuitch N.","year":"2021"},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.32065"},{"key":"e_1_2_14_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_14_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1478"},{"key":"e_1_2_14_8_1","doi-asserted-by":"publisher","DOI":"10.3390\/children9060774"},{"key":"e_1_2_14_9_1","unstructured":"National Center for Health Statistics(2024).National Center for Health Statistics (U.S.) Series: Weekly Report: Morbidity and Mortality Weekly Report (MMWR).https:\/\/www.cdc.gov\/nchs\/index.html"},{"key":"e_1_2_14_10_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2007.9923"},{"key":"e_1_2_14_11_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm7215a1"},{"key":"e_1_2_14_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010016\u20109949\u20106"},{"key":"e_1_2_14_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2017.8"},{"key":"e_1_2_14_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1959"},{"issue":"6","key":"e_1_2_14_15_1","first-page":"1","article-title":"Assessing the experience of medically ill youth participating in psychological research: Benefit, burden, or both?","volume":"37","author":"Wiener L.","year":"2015","journal-title":"IRB"},{"issue":"6","key":"e_1_2_14_16_1","first-page":"1","article-title":"Is participating in psychological research a benefit, burden, or both for medically ill youth and their caregivers?","volume":"37","author":"Wiener 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