| Title |
Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative
|
|---|---|
| Published in |
Annals of the Rheumatic Diseases, October 2017
|
| DOI | 10.1136/annrheumdis-2017-211904 |
| Pubmed ID | |
| Authors |
Jasmin B Kuemmerle-Deschner, Sandra Hansmann, Nico M Wulffraat, Sebastiaan J Vastert, Kristien Hens, Jordi Anton, Tadej Avcin, Alberto Martini, Isabelle Koné-Paut, Yosef Uziel, Angelo Ravelli, Carine Wouters, David Shaw, Seza Özen, Andreas Eikelberg, Berent J Prakken, Nicolino Ruperto, Gerd Horneff, Tamas Constantin, Michael W Beresford, Marijn Sikken, Helen E Foster, Iris Haug, Sabrina Schuller, Christine Jägle, Susanne M Benseler |
| Abstract |
Innovative research in childhood rheumatic diseases mandates international collaborations. However, researchers struggle with significant regulatory heterogeneity; an enabling European Union (EU)-wide framework is missing. The aims of the study were to systematically review the evidence for best practice and to establish recommendations for collaborative research. The Paediatric Rheumatology European Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) project enabled a scoping review and expert discussion, which then informed the systematic literature review. Published evidence was synthesised; recommendations were drafted. An iterative review process and consultations with Ethics Committees and European experts for ethical and legal aspects of paediatric research refined the recommendations. SHARE experts and patient representatives vetted the proposed recommendations at a consensus meeting using Nominal Group Technique. Agreement of 80% was mandatory for inclusion. The systematic literature review returned 1319 records. A total of 223 full-text publications plus 22 international normative documents were reviewed; 85 publications and 16 normative documents were included. A total of 21 recommendations were established including general principles (1-3), ethics (4-7), paediatric principles (8 and 9), consent to paediatric research (10-14), paediatric databank and biobank (15 and 16), sharing of data and samples (17-19), and commercialisation and third parties (20 and 21). The refined recommendations resulted in an agreement of >80% for all recommendations. The SHARE initiative established the first recommendations for Paediatric Rheumatology collaborative research across borders in Europe. These provide strong support for an urgently needed European framework and evidence-based guidance for its implementation. Such changes will promote research in children with rheumatic diseases. |
X Demographics
The data shown below were collected from the profiles of 8 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Spain | 5 | 63% |
| United Kingdom | 1 | 13% |
| Unknown | 2 | 25% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 5 | 63% |
| Practitioners (doctors, other healthcare professionals) | 2 | 25% |
| Scientists | 1 | 13% |
Mendeley readers
The data shown below were compiled from readership statistics for 28 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 28 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Other | 5 | 18% |
| Student > Ph. D. Student | 4 | 14% |
| Researcher | 3 | 11% |
| Student > Master | 3 | 11% |
| Student > Bachelor | 2 | 7% |
| Other | 5 | 18% |
| Unknown | 6 | 21% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 9 | 32% |
| Psychology | 3 | 11% |
| Nursing and Health Professions | 2 | 7% |
| Business, Management and Accounting | 2 | 7% |
| Social Sciences | 2 | 7% |
| Other | 4 | 14% |
| Unknown | 6 | 21% |
Attention Score in Context
This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 11 July 2018.
All research outputs
#6,059,143
of 23,006,268 outputs
Outputs from Annals of the Rheumatic Diseases
#3,135
of 7,271 outputs
Outputs of similar age
#97,787
of 324,711 outputs
Outputs of similar age from Annals of the Rheumatic Diseases
#48
of 81 outputs
Altmetric has tracked 23,006,268 research outputs across all sources so far. This one has received more attention than most of these and is in the 73rd percentile.
So far Altmetric has tracked 7,271 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 13.1. This one has gotten more attention than average, scoring higher than 56% of its peers.
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