Evidence map›Paper›PMID 36130763›Full record

ArticleBMJ open2022

Cohort profile: pathways to care among people with disorders of sex development (DSD).

Michael Goodman, Rami Yacoub, Darios Getahun, Courtney E McCracken, Suma Vupputuri, Timothy L Lash, Douglas Roblin, Richard Contreras, Lee Cromwell, Melissa D Gardner and 20 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.7field-weighted citation impact, top 33% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 8 citations in OpenAlex.

  1. Article
  2. Review
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

30 authors at 5 institutions in 2 countries.

Michael GoodmanEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA mgoodm2@emory.edu.ORCID 0000-0001-6956-6879
Rami YacoubEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Darios GetahunResearch and Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA.
Courtney E McCrackenCenter for Research and Evaluation, Kaiser Permanente Georgia, Atlanta, Georgia, USA.
Suma VupputuriMid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA.
Timothy L LashEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Douglas RoblinMid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA.
Richard ContrerasResearch and Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA.
Lee CromwellCenter for Research and Evaluation, Kaiser Permanente Georgia, Atlanta, Georgia, USA.
Melissa D GardnerSusan B Meister Child Health and Evaluation Research Center, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Trenton HoffmanEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Haihong HuMid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA.
Theresa M ImResearch and Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA.
Radhika Prakash AsraniEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Brandi RobinsonCenter for Research and Evaluation, Kaiser Permanente Georgia, Atlanta, Georgia, USA.
Fagen XieResearch and Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA.
Rebecca NashEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Qi ZhangEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Sadaf A BhaiEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Kripa VenkatakrishnanEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.ORCID 0000-0003-3178-3397
Bethany StollerEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Yijun LiuEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Cricket GullicksonEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Maaz AhmedEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
David RinkEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Ava VossEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Hye-Lee JungEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Jin KimEpidemiology, Rollins School of Public Health, Atlanta, Georgia, USA.
Peter A LeeDivision of Endocrinology, Department of Pediatrics, Penn State College of Medicine, Hershey, Pennsylvania, USA.
David E SandbergSusan B Meister Child Health and Evaluation Research Center, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Georgia Department of Public Health · USKaiser Permanente · USUniversity of Michigan · USAarhus University · DKPenn State Milton S. Hershey Medical Center · US

Funding

Pathways to care and health outcomes among DSD patientsR01HD092595 · NICHD · EMORY UNIVERSITY · PI GOODMAN, MICHAEL, SANDBERG, DAVID ERIC · 2017 to 2021
$3.1M
NICHD NIH HHS R01 HD092595
6 · The paper itself

Abstract

purposeThe '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).

participantsUsing 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. FINDINGS TO DATE: 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. FUTURE PLANS: 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.

Indexed as

Adrenal Hyperplasia, CongenitalAndrogen-Insensitivity SyndromeChildCohort StudiesHealth StatusHumansMaleSexual Developmentepidemiologygeneral endocrinologypaediatric endocrinologysexual medicine

Identifiers

PMID36130763
PMCPMC9494584
OpenAlexW4296564658

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.