Evidence map›Paper›PMID 32964005›Full record

ArticleERJ open research2020

Access to medicines for rare diseases: beating the drum for primary ciliary dyskinesia.

Suzanne Crowley, Inês Azevedo, Mieke Boon, Andrew Bush, Ernst Eber, Eric Haarman, Bulent Karadag, Karsten Kötz, Margaret Leigh, Antonio Moreno-Galdó and 14 more

Open access · goldAbstract readEditorial
In one paragraph

Article in ERJ open research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.5field-weighted citation impact, top 30% 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

1 citing paper in PubMed, 5 citations in OpenAlex.

  1. Current and Future Treatments in Primary Ciliary Dyskinesia.International journal of molecular sciences · 2021
    Review
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

24 authors at 20 institutions in 22 countries.

Suzanne CrowleyPaediatric Dept for Lung and Allergic diseases, Oslo University Hospital, Oslo, Norway.ORCID https://orcid.org/0000-0003-2786-8718
Inês AzevedoCentro Materno-Pediátrico, Centro Hospitalar Universitário de S. João, Porto, Portugal.
Mieke BoonDept of Paediatrics, University Hospital Gasthuisberg, Leuven, Belgium.
Andrew BushDepts of Paediatrics and Paediatric Respiratory Medicine, Imperial College and Royal Brompton Hospital, London, UK.
Ernst EberDivision of Paediatric Pulmonology and Allergology, Dept of Paediatrics and Adolescent Medicine, Medical University of Graz, Graz, Austria.
Eric HaarmanDept of Pediatric Pulmonology, VU University Medical Center, Amsterdam, The Netherlands.
Bulent KaradagDept of Pediatric Pulmonology, Marmara University, School of Medicine, Istanbul, Turkey.
Karsten KötzQueen Silvias Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
Margaret LeighDept of Pediatrics and Marsico Lung Institute, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Antonio Moreno-GaldóPediatric Pulmonology Section, Hospital Universitari Vall d'Hebron, Barcelona, Spain.
Huda MussaffiSchneider Children's Medical Center of Israel, Petach-Tikva and Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel.
Kim G NielsenDanish PCD Centre, Pediatric Pulmonary Service, Dept of Pediatrics and Adolescent Medicine, Rigshospitalet (Copenhagen University Hospital), Copenhagen, Denmark.ORCID https://orcid.org/0000-0001-5906-9449
Heymut OmranDept of General Pediatrics, University Hospital, Westfalian Wilhelms-University, Muenster, Germany.
Jean-François PaponAP-HP, Hôpital Kremlin-Bicetre, Service d'ORL et de Chirurgie Cervico-Faciale and Faculté de Médecine, Université Paris-Saclay, 94070 Le Kremlin-Bicêtre, INSERM, U955 and CNRS, ERL 7240, Créteil, France.
Petr PohunekPaediatric Dept, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic.ORCID https://orcid.org/0000-0003-4557-2515
Kostas Priftis3rd Dept of Paediatrics, University General Hospital Attikon, National and Kapodistrian University of Athens, Athens, Greece.
Bernhard RindlisbacherPatient Association Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V., Steffisburg, Switzerland.
Francesca SantamariaPediatric Pulmonology, Dept of Translational Medical Sciences, Federico II University, Azienda Ospedaliera Universitaria Federico II, Naples, Italy.
Arunas ValiulisVilnius University Medical Faculty, Institute of Clinical Medicine, Clinic of Children's Diseases, Vilnius, Lithuania.ORCID https://orcid.org/0000-0002-0287-9915
Michal WittDept of Molecular and Clinical Genetics, Institute of Human Genetics Polish Academy of Sciences, Poznan, Poland.
Panayiotis YiallourosMedical School, University of Cyprus, Nicosia, Cyprus.
Zorica ZivkovicChildren's Hospital for Lung Diseases and TB, Medical Centre "Dr Dragisa Misovic", Belgrade, Serbia.
Claudia E KuehniInstitute of Social and Preventive Medicine and Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0001-8957-2002
Jane S LucasPrimary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust and Clinical and Experimental Medicine, University of Southampton, Southampton, UK.ORCID https://orcid.org/0000-0001-8701-9975
Amsterdam UMC Location Vrije Universiteit Amsterdam · NLCentre National de la Recherche Scientifique · FRCharles University · CZCopenhagen University Hospital · DKEuropean Union of Medical Specialists · BEFederico II University Hospital · ITInstitute of Human Genetics · PLMarmara University · TRMedical University of Graz · ATNational and Kapodistrian University of Athens · GROslo University Hospital · NORoyal Brompton Hospital · GBSahlgrenska University Hospital · SETel Aviv University · ILUniversidade do Porto · PTUniversitat Autònoma de Barcelona · ESUniversity Hospital Southampton NHS Foundation Trust · GBUniversity of Bern · CHUniversity of Cyprus · CYUniversity of Münster · DE

Funding

Longitudinal Characterization of Respiratory Tract Exacerbations and Treatment Responses in Primary Ciliary DyskinesiaU54HL096458 · NHLBI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI DAVIS, STEPHANIE DUGGINS, FERKOL, THOMAS W · 2009 to 2023
$20.0M
NHLBI NIH HHS U54 HL096458
6 · The paper itself

Abstract

PubMed holds no abstract for this paper.

Identifiers

PMID32964005
PMCPMC7487359
OpenAlexW3085281140

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.