Evidence map›Paper›PMID 30287898›Full record

ArticleEuropean journal of human genetics : EJHG2019

Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation.

Francisca Nordfalk, Claus Thorn Ekstrøm

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of human genetics : EJHG, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.

0numbers the graph read from it
0cells of the map it votes in
15citing 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

15 citing papers in PubMed.

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  9. Multiomics to elucidate inflammatory bowel disease risk factors and pathways.Nature reviews. Gastroenterology & hepatology · 2022
    Review
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

2 authors.

Francisca NordfalkCenter for Medical Sciences and Technologies, Section for Health Services Research, Department of Public Health, University of Copenhagen, Copenhagen, Denmark. nordfalk@sund.ku.dk.ORCID http://orcid.org/0000-0002-3536-9268
Claus Thorn EkstrømSection of Biostatistics, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.

Funding

European Research Council 682110
6 · The paper itself

Abstract

Each year millions of newborns are part of a newborn disease-screening program in which, after initial screening, the newborn dried blood spot (NDBS) samples can be stored and used as a population-based research resource. However, very little knowledge exists about how these samples are used for secondary purposes. Our objective is to estimate and describe the usage of a NDBS-based national population biobank for secondary research purposes. We therefore conducted a scoping study with a literature search for all published articles using samples from the Danish Newborn Screening Biobank. Our main inclusion criteria were that the articles had to have actively used and analyzed one or more of the Danish NDBS samples for a purpose beyond the primary screening. Our search led to a final 104 articles, which were coded for three main purposes: (1) how many samples were used in each article, (2) the field of their research, and (3) information on consent and ethics approval as research. From our analysis, we present two main findings: an estimated use of up to 37.5% of all samples in the newborn screening biobank have been part of published research, and a shift in the research areas from methodological and metabolic studies to studies concerning mental illness. This paper provides new insights into the use of a national biobank, and we hope that the results will contribute to the discussions on the use of biological samples for research purposes, and also inspire a greater transparency in the future use of NDBS samples.

Indexed as

Biological Specimen BanksDenmarkDried Blood Spot TestingFacilities and Services UtilizationFemaleGenetic TestingHumansInfant, NewbornMaleNeonatal Screening

Identifiers

PMID30287898
PMCPMC6336790

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Registered trials

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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.