Evidence map›Paper›PMID 38804359›Full record

ArticleInternational journal of neonatal screening2024

Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening.

Yvonne Kellar-Guenther, Lauren Barringer, Katherine Raboin, Ginger Nichols, Kathy Y F Chou, Kathy Nguyen, Amy R Burke, Sandy Fawbush, Joyal B Meyer, Morna Dorsey and 6 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in International journal of neonatal screening, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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

2 citing papers in PubMed.

  1. Article
  2. 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

16 authors.

Yvonne Kellar-GuentherCenter for Public Health Innovation, Evergreen, CO 80439, USA.ORCID 0000-0003-1753-7173
Lauren BarringerChildrens Hospital Colorado, Aurora, CO 80045, USA.
Katherine RaboinConnecticut Newborn Screening Network, Connecticut Children's, Hartford, CT 06106, USA.ORCID 0009-0002-4037-3699
Ginger NicholsConnecticut Newborn Screening Network, Connecticut Children's, Hartford, CT 06106, USA.
Kathy Y F ChouNewborn Screening Program, Wadsworth Center, New York State Department of Health, Albany, NY 12208, USA.ORCID 0009-0006-4859-0435
Kathy NguyenDivision of Allergy & Immunology, Department of Pediatrics, University of California, San Francisco, CA 94143, USA.
Amy R BurkeNorth Dakota Health & Human Services Newborn Screening Program, Bismarck, ND 58505, USA.
Sandy FawbushHealthTech Solutions, Frankfort, KY 40601, USA.
Joyal B MeyerNorth Dakota Health & Human Services Newborn Screening Program, Bismarck, ND 58505, USA.
Morna DorseyDivision of Allergy & Immunology, Department of Pediatrics, University of California, San Francisco, CA 94143, USA.ORCID 0000-0002-9432-3542
Amy BrowerAmerican College of Genetics and Genomics, Bethesda, MD 20814, USA.ORCID 0000-0001-6621-1247
Kee ChanAmerican College of Genetics and Genomics, Bethesda, MD 20814, USA.
Mei LietschAmerican College of Genetics and Genomics, Bethesda, MD 20814, USA.ORCID 0009-0007-5286-2293
Jennifer TaylorAmerican College of Genetics and Genomics, Bethesda, MD 20814, USA.ORCID 0000-0001-6942-1696
Michele CagganaNewborn Screening Program, Wadsworth Center, New York State Department of Health, Albany, NY 12208, USA.
Marci K SontagCenter for Public Health Innovation, Evergreen, CO 80439, USA.ORCID 0000-0003-2501-652X

Funding

HRSA HHS HRSA-21-079
6 · The paper itself

Abstract

Newborn screening (NBS) is hailed as a public health success, but little is known about the long-term outcomes following a positive newborn screen. There has been difficulty gathering long-term follow-up (LTFU) data consistently, reliably, and with minimal effort. Six programs developed and tested a core set of minimal LTFU data elements. After an iterative data collection process and the development of a data collection tool, the group agreed on the minimal LTFU data elements. The denominator captured all infants with an NBS diagnosis, accounting for children who moved or died prior to the follow-up year. They also agreed on three LTFU outcomes: if the child was still alive, had contact with a specialist, and received appropriate care specific to their diagnosis within the year. The six programs representing NBS public health programs, clinical providers, and research programs provided data across multiple NBS disorders. In 2022, 83.8% (563/672) of the children identified by the LTFU programs were alive and living in the jurisdiction; of those, 92.0% (518/563) saw a specialist, and 87.7% (494/563) received appropriate care. The core LTFU data elements can be applied as a foundation to address the impact of early diagnosis by NBS within and across jurisdictions.

Indexed as

equitylong-term follow-up datanewborn screeningpublic health

Identifiers

PMID38804359
PMCPMC11130882

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.