Evidence map›Paper›PMID 27244688›Full record

ArticlePrenatal diagnosis2016

Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States.

Stephanie Meredith, Christopher Kaposy, Victoria J Miller, Megan Allyse, Subhashini Chandrasekharan, Marsha Michie, Prenatal Testing PAG Coalition

Abstract read
In one paragraph

Article in Prenatal diagnosis, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
2.6field-weighted citation impact, top 9% 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

3 citing papers in PubMed, 8 citations in OpenAlex.

  1. Article
  2. Article
  3. 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

7 authors at 6 institutions in 2 countries.

Stephanie MeredithNational Center for Prenatal and Postnatal Down Syndrome Resources, University of Kentucky, Louisville, KY, USA.
Christopher KaposyMemorial University of Newfoundland, St. Johns, Newfoundland, Canada.
Victoria J MillerTrisomy 18 Foundation, Dale City, VA, USA.
Megan AllyseMayo Clinic, Rochester, MN, USA.ORCID http://orcid.org/0000-0001-6136-9256
Subhashini ChandrasekharanDuke University, Durham, NC, USA.
Marsha MichieUniversity of California, San Francisco, CA, USA.ORCID http://orcid.org/0000-0001-6631-828X
Prenatal Testing PAG Coalition
ASIS Foundation · USDuke University · USMayo Clinic in Arizona · USMemorial University of Newfoundland · CAUniversity of California, San Francisco · USUniversity of Kentucky · US

Funding

The Management and Organization Core will be administered by the Center for GenomP50HG003391 · NHGRI · DUKE UNIVERSITY · PI COOK-DEEGAN, ROBERT MULLAN · 2004 to 2014
$9.9M
Intellectual Property and Access to Noninvasive Prenatal Genetic TestingR01HG007074 · NHGRI · DUKE UNIVERSITY · PI CHANDRASEKHARAN, SUBHASHINI · 2013 to 2015
$1.1M
Mapping an ELSI-integrated translational pathway with cell-free fetal DNA testingR00HG006452 · NHGRI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI MICHIE, MARSHA MABRY · 2014 to 2016
$747k
NHGRI NIH HHS P50 HG003391NHGRI NIH HHS R00 HG006452NHGRI NIH HHS R01 HG007074
6 · The paper itself

Abstract

The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day-long meeting, a panel of patient advocacy group (PAG) representatives discussed concerns and challenges raised by prenatal cell-free DNA (cfDNA) screening, which has resulted in larger demands upon PAGs from concerned patients receiving prenatal cfDNA screening results. Prominent concerns included confusion about the accuracy of cfDNA screening and a lack of patient education resources about genetic conditions included in cfDNA screens. Some of the challenges faced by PAGs included funding limitations, lack of consistently implemented standards of care and oversight, diverse perspectives among PAGs and questions about neutrality, and lack of access to training and genetic counselors. PAG representatives also put forward suggestions for addressing these challenges, including improving educational and PAG funding and increasing collaboration between PAGs and the medical community. © 2016 John Wiley & Sons, Ltd.

Indexed as

Organizations, NonprofitPatient AdvocacyPrenatal DiagnosisChromosome DisordersDNAFemaleGenetic CounselingHealth Services AccessibilityHumansPatient Education as TopicPredictive Value of TestsPregnancySensitivity and SpecificitySequence Analysis, DNAStandard of CareUnited StatesDNA

Identifiers

PMID27244688
PMCPMC4974118
OpenAlexW2413592116

What OpenQuestion holds

Textmetadata
LicenceTDM
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.