Evidence map›Paper›PMID 32000824›Full record

ArticleOrphanet journal of rare diseases2020

Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey.

Riccardo Papa, Andrew Cant, Christoph Klein, Mark A Little, Nico M Wulffraat, Marco Gattorno, Nicolino Ruperto, ERN RITA Council

Abstract readLetter
In one paragraph

Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing 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

6 citing papers in PubMed.

  1. Review
  2. Review
  3. Article
  4. Article
  5. [Healthcare networks for people with rare diseases: integrating data and expertise].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2022
    Review
  6. 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

8 authors.

Riccardo PapaClinica Pediatrica e Reumatologia, IRCCS Istituto Giannina Gaslini, Genoa, Italy.
Andrew CantGreat North Children's Hospital & Institute for Cellular Medicine, University of Newcastle, Newcastle upon Tyne, UK.
Christoph KleinDepartment of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany.
Mark A LittleTrinity Health Kidney Centre, Tallaght University Hospital, Dublin, Ireland.
Nico M WulffraatDepartment of Pediatrics, Section Pediatric Rheumatology, Wilhelmina Children's Hospital, University Medical Centrum Utrecht, Utrecht, Netherlands.
Marco GattornoCentre for Autoinflammatory Diseases and Immunodeficiencies, IRCCS Istituto Giannina Gaslini, Genoa, Italy.
Nicolino RupertoUOSID Centro Trial, PRINTO, IRCCS Istituto Giannina Gaslini, Genoa, Italy. nicolaruperto@gaslini.org.
ERN RITA Council

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

The Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease (RITA) network is a European Research Network (ERN) that brings together the leading centres for rare immune disorders. On April 2018 an online survey was sent to all RITA members in order to facilitate the harmonization of data collection in rare immune disorders registries. Currently, as many as 52 different registries collect data on rare immune disorders, of whom 30 (58%) are dedicated primarily to autoimmune diseases, 15 (29%) to primary immunodeficiencies and 12 (23%) to autoinflammatory disorders. Improving data on patient safety, outcome, and quality of life measures is warranted to unfold the full potential of RITA registries.

Indexed as

Immunologic Deficiency SyndromesQuality of LifeDelivery of Health CareHumansRare DiseasesRegistriesAutoimmune disordersAutoinflammatory diseasesDisease registryEuropean research networkPrimary immunodeficiency

Identifiers

PMID32000824
PMCPMC6993334

What OpenQuestion holds

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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.