Evidence map›Paper›PMID 35142618›Full record

ArticleJMIR pediatrics and parenting2022

Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study.

Lisa M Gehtland, Ryan S Paquin, Sara M Andrews, Adam M Lee, Angela Gwaltney, Martin Duparc, Emily R Pfaff, Donald B Bailey

Registry-linked trialOpen access · goldAbstract read
In one paragraph

Article in JMIR pediatrics and parenting, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03655223 (Early Check), which is not on this map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
2.7field-weighted citation impact, top 8% 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.

NCT03655223 active not recruitingnot on this map

Early Check: A Collaborative Innovation to Facilitate Pre-Symptomatic Clinical Trials in Newborns

TypeobservationalSponsorRTI InternationalRan2018 to 2026Enrolled30,000ConditionsSpinal Muscular Atrophy, Fragile X Syndrome, Fragile X - Premutation, Duchenne Muscular DystrophyArmsConfirmatory Testing
3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 10 citations in OpenAlex.

  1. Trial
  2. Article
  3. Article
  4. Review
  5. Implementation ofJournal of clinical and translational science · 2024
    Article
  6. Review
  7. Article
  8. Article
  9. 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

8 authors at 2 institutions in 1 country.

Lisa M GehtlandRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0002-4475-9268
Ryan S PaquinRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0002-0947-7409
Sara M AndrewsRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0003-0218-0976
Adam M LeeDepartment of Medicine, University of North Carolina Chapel Hill, Chapel Hill, NC, United States.ORCID https://orcid.org/0000-0003-2141-4264
Angela GwaltneyRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0002-2305-7187
Martin DuparcRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0002-7143-1866
Emily R PfaffDepartment of Medicine, University of North Carolina Chapel Hill, Chapel Hill, NC, United States.ORCID https://orcid.org/0000-0002-6840-9756
Donald B BaileyRTI International, Research Triangle Park, NC, United States.ORCID https://orcid.org/0000-0002-0513-9330
RTI International · USUniversity of North Carolina at Chapel Hill · US

Funding

Re-Entry Supplement: Investigation of Oral Microbial Enzymes for the Detection and Treatment of Periodontal DiseaseUL1TR002489 · NCATS · UNIV OF NORTH CAROLINA CHAPEL HILL · PI BUSE, JOHN BERNARD, SHAHEEN, NICHOLAS J · 2018 to 2022
$48.6M
Early Check: A Collaborative Innovation to Facilitate Pre-Symptomatic Clinical Trials in NewbornsU01TR001792 · NCATS · RESEARCH TRIANGLE INSTITUTE · PI BAILEY, DONALD B, COTTEN, CHARLES MICHAEL · 2016 to 2020
$7.8M
NCATS NIH HHS U01 TR001792NCATS NIH HHS UL1 TR002489
6 · The paper itself

Abstract

backgroundMany research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients.

objectiveThe first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check). The second aim was to determine if there were differences in opening the patient portal research recruitment invitation and study enrollment by race and ethnicity, age, or rural/urban home address.

methodsWe used a computable phenotype and queried the health care system's clinical data warehouse to identify women whose newborns would likely be eligible. Research recruitment invitations were sent through the women's patient portals. We conducted logistic regressions to test whether women enrolled their newborns after receipt of a patient portal invitation and whether there were differences by race and ethnicity, age, and rural/urban home address.

resultsResearch recruitment invitations were sent to 4510 women not yet enrolled through their patient portals between November 22, 2019, through March 5, 2020. Among women who received a patient portal invitation, 3.6% (161/4510) enrolled their newborns within 27 days. The odds of enrolling among women who opened the invitation was nearly 9 times the odds of enrolling among women who did not open their invitation (SE 3.24, OR 8.86, 95% CI 4.33-18.13; P<.001). On average, it took 3.92 days for women to enroll their newborn in the study, with 64% (97/161) enrolling their newborn within 1 day of opening the invitation. There were disparities by race and urbanicity in enrollment in the study after receipt of a patient portal research invitation but not by age. Black women were less likely to enroll their newborns than White women (SE 0.09, OR 0.29, 95% CI 0.16-0.55; P<.001), and women in urban zip codes were more likely to enroll their newborns than women in rural zip codes (SE 0.97, OR 3.03, 95% CI 1.62-5.67; P=.001). Black women (SE 0.05, OR 0.67, 95% CI 0.57-0.78; P<.001) and Hispanic women (SE 0.07, OR 0.73, 95% CI 0.60-0.89; P=.002) were less likely to open the research invitation compared to White women.

conclusionsPatient portals are an effective way to recruit participants for research studies, but there are substantial racial and ethnic disparities and disparities by urban/rural status in the use of patient portals, the opening of a patient portal invitation, and enrollment in the study.

trial registrationClinicalTrials.gov NCT03655223; https://clinicaltrials.gov/ct2/show/NCT03655223.

Indexed as

electronic health recordspatient portalspatient selectionrace factorsracial disparitiesresearch subject recruitment

Identifiers

PMID35142618
PMCPMC8874929
OpenAlexW4211151792

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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.