Evidence map›Paper›PMID 25403899›Full record

ArticleJournal of genetic counseling2015

Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center, Multi-State Public Health Project.

Kupper Wintergerst, Gina Gembel, Tracey Kreipe, Patrick Zeller, Erica Eugster, Bill Young, Karen Andruszewski, Mary Kleyn, Troi Cunningham, Sandy Fawbush and 6 more

Open access · bronzeAbstract readMulticenter Study
In one paragraph

Article in Journal of genetic counseling, 2015. 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
0.4field-weighted citation impact, top 37% 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

2 citing papers in PubMed, 4 citations in OpenAlex.

  1. Review
  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 at 9 institutions in 1 country.

Kupper WintergerstDepartment of Pediatrics, Endocrinology, School of Medicine, University of Louisville, Louisville, KY, USA, kawint01@louisville.edu.
Gina Gembel
Tracey Kreipe
Patrick Zeller
Erica Eugster
Bill Young
Karen Andruszewski
Mary Kleyn
Troi Cunningham
Sandy Fawbush
Nancy Vanderburg
Joe Sockalosky
Ram Menon
Sharon Linard
Gary Hoffman
Lisa Gorman
Collaborative Group (United States) · USKentucky Department for Public Health · USMichigan Department of Health and Human Services · USMichigan Public Health Institute · USIllinois Department of Public Health · USIndiana University School of MedicineMinnesota Department of Health · USUniversity of Michigan–Ann Arbor · USUniversity of Wisconsin System · US

Funding

PHS HHS U22MC03963/H46MC24092
6 · The paper itself

Abstract

The Region 4 Midwest Genetics Collaborative, made up of seven regional states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin), brought together pediatric endocrinologists, state laboratory experts, public health follow-up specialists, and parents of children with congenital hypothyroidism (CH) to identify the three-year follow-up management and education patterns of primary care clinicians and pediatric endocrinologists in the care of children diagnosed with CH by state newborn screening (NBS) programs. Among a number of challenges, each state had different NBS methods, data systems, public health laws, and institutional review board (IRB) requirements. Furthermore, the diagnosis of CH was complicated by the timing of the NBS sample, the gestational age, weight, and co-morbidities at delivery. There were 409 children with CH identified through NBS in 2007 in the seven state region. The clinician of record and the parents of these children were invited to participate in a voluntary survey. Approximately 64 % of clinician surveys were collected with responses to questions relating to treatment, monitoring practices, educational resources, genetic counseling, and services provided to children with confirmed CH and their families. Nearly one-quarter (24 %) of parents surveyed responded to questions relating to treatment, education, genetic counseling, resources, and services they received or would like to receive. De-identified data from six of the seven states were compiled for analysis, with one state being unable to obtain IRB approval within the study timeline. The data from this collaborative effort will improve state follow-up programs and aid in developing three-year follow-up guidelines for children diagnosed with CH. To aid in the facilitation of similar public health studies, this manuscript highlights the challenges faced, and focuses on the pathway to a successful multi-state public health endeavor.

Indexed as

AdolescentChildCongenital HypothyroidismFemaleFollow-Up StudiesGenetic CounselingHumansInfant, NewbornNeonatal ScreeningParentsPhysicians, Primary CarePublic HealthSurveys and QuestionnairesUnited States

Identifiers

PMID25403899
PMCPMC4434854
OpenAlexW2062804655

What OpenQuestion holds

Textmetadata
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.