Matches in SemOpenAlex for { <https://semopenalex.org/work/W4296564658> ?p ?o ?g. }
- W4296564658 endingPage "e063409" @default.
- W4296564658 startingPage "e063409" @default.
- W4296564658 abstract "The 'DSD Pathways' study was initiated to assess health status and patterns of care among people enrolled in large integrated healthcare systems and diagnosed with conditions comprising the broad category of disorders (differences) of sex development (DSD). The objectives of this communication are to describe methods of cohort ascertainment for two specific DSD conditions-classic congenital adrenal hyperplasia with 46,XX karyotype (46,XX CAH) and complete androgen insensitivity syndrome (CAIS).Using electronic health records we developed an algorithm that combined diagnostic codes, clinical notes, laboratory data and pharmacy records to assign each cohort candidate a 'strength-of-evidence' score supporting the diagnosis of interest. A sample of cohort candidates underwent a review of the full medical record to determine the score cutoffs for final cohort validation.Among 5404 classic 46,XX CAH cohort candidates the strength-of-evidence scores ranged between 0 and 10. Based on sample validation, the eligibility cut-off for full review was set at the strength-of-evidence score of ≥7 among children under the age of 8 years and ≥8 among older cohort candidates. The final validation of all cohort candidates who met the cut-off criteria identified 115 persons with classic 46,XX CAH. The strength-of-evidence scores among 648 CAIS cohort candidates ranged from 2 to 10. There were no confirmed CAIS cases among cohort candidates with scores <6. The in-depth medical record review for candidates with scores ≥6 identified 61 confirmed cases of CAIS.As the first cohort of this type, the DSD Pathways study is well-positioned to fill existing knowledge gaps related to management and outcomes in this heterogeneous population. Analyses will examine diagnostic and referral patterns, adherence to care recommendations and physical and mental health morbidities examined through comparisons of DSD and reference populations and analyses of health status across DSD categories." @default.
- W4296564658 created "2022-09-21" @default.
- W4296564658 creator A5001555071 @default.
- W4296564658 creator A5004064950 @default.
- W4296564658 creator A5005441444 @default.
- W4296564658 creator A5008734895 @default.
- W4296564658 creator A5010118231 @default.
- W4296564658 creator A5011958180 @default.
- W4296564658 creator A5013211426 @default.
- W4296564658 creator A5014068329 @default.
- W4296564658 creator A5014082514 @default.
- W4296564658 creator A5019092501 @default.
- W4296564658 creator A5026984704 @default.
- W4296564658 creator A5028519692 @default.
- W4296564658 creator A5029080053 @default.
- W4296564658 creator A5029977604 @default.
- W4296564658 creator A5030657164 @default.
- W4296564658 creator A5032119756 @default.
- W4296564658 creator A5033301570 @default.
- W4296564658 creator A5036077150 @default.
- W4296564658 creator A5038890216 @default.
- W4296564658 creator A5039413618 @default.
- W4296564658 creator A5044860552 @default.
- W4296564658 creator A5047938803 @default.
- W4296564658 creator A5062298305 @default.
- W4296564658 creator A5069262530 @default.
- W4296564658 creator A5069997688 @default.
- W4296564658 creator A5070522691 @default.
- W4296564658 creator A5078768684 @default.
- W4296564658 creator A5081065871 @default.
- W4296564658 creator A5082815773 @default.
- W4296564658 creator A5086404703 @default.
- W4296564658 date "2022-09-01" @default.
- W4296564658 modified "2023-10-07" @default.
- W4296564658 title "Cohort profile: pathways to care among people with disorders of sex development (DSD)" @default.
- W4296564658 cites W1596407667 @default.
- W4296564658 cites W1770920882 @default.
- W4296564658 cites W1803945557 @default.
- W4296564658 cites W1833485806 @default.
- W4296564658 cites W1966604550 @default.
- W4296564658 cites W1966721457 @default.
- W4296564658 cites W1972087695 @default.
- W4296564658 cites W1973733021 @default.
- W4296564658 cites W1980040599 @default.
- W4296564658 cites W1982171656 @default.
- W4296564658 cites W1986087095 @default.
- W4296564658 cites W1989618578 @default.
- W4296564658 cites W1991990426 @default.
- W4296564658 cites W1993263610 @default.
- W4296564658 cites W1996223477 @default.
- W4296564658 cites W2009366015 @default.
- W4296564658 cites W2018250427 @default.
- W4296564658 cites W2018400995 @default.
- W4296564658 cites W2019295722 @default.
- W4296564658 cites W2020265106 @default.
- W4296564658 cites W2022584463 @default.
- W4296564658 cites W2024962654 @default.
- W4296564658 cites W2027981626 @default.
- W4296564658 cites W2028894983 @default.
- W4296564658 cites W2029352009 @default.
- W4296564658 cites W2030540818 @default.
- W4296564658 cites W2035650054 @default.
- W4296564658 cites W2038505404 @default.
- W4296564658 cites W2041610749 @default.
- W4296564658 cites W2044202134 @default.
- W4296564658 cites W2046607814 @default.
- W4296564658 cites W2047120138 @default.
- W4296564658 cites W2054264530 @default.
- W4296564658 cites W2056125291 @default.
- W4296564658 cites W2068952313 @default.
- W4296564658 cites W2081087045 @default.
- W4296564658 cites W2081722744 @default.
- W4296564658 cites W2087013802 @default.
- W4296564658 cites W2091304668 @default.
- W4296564658 cites W2093120355 @default.
- W4296564658 cites W2095271059 @default.
- W4296564658 cites W2095580634 @default.
- W4296564658 cites W2102643461 @default.
- W4296564658 cites W2103699943 @default.
- W4296564658 cites W2107794721 @default.
- W4296564658 cites W2110486614 @default.
- W4296564658 cites W2110618106 @default.
- W4296564658 cites W2117290584 @default.
- W4296564658 cites W2124165771 @default.
- W4296564658 cites W2128186063 @default.
- W4296564658 cites W2129876849 @default.
- W4296564658 cites W2135064152 @default.
- W4296564658 cites W2138293493 @default.
- W4296564658 cites W2141565480 @default.
- W4296564658 cites W2144357013 @default.
- W4296564658 cites W2154671652 @default.
- W4296564658 cites W2156526029 @default.
- W4296564658 cites W2158499208 @default.
- W4296564658 cites W2162796684 @default.
- W4296564658 cites W2163640365 @default.
- W4296564658 cites W2166889936 @default.
- W4296564658 cites W2178394645 @default.
- W4296564658 cites W2274694371 @default.