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X Demographics
Mendeley readers
Attention Score in Context
| Title |
The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases
|
|---|---|
| Published in |
Orphanet Journal of Rare Diseases, November 2016
|
| DOI | 10.1186/s13023-016-0528-6 |
| Pubmed ID | |
| Authors |
M. K. Javaid, L. Forestier-Zhang, L. Watts, A. Turner, C. Ponte, H. Teare, D. Gray, N. Gray, R. Popert, J. Hogg, J. Barrett, R. Pinedo-Villanueva, C. Cooper, R. Eastell, N. Bishop, R. Luqmani, P. Wordsworth, J. Kaye |
| Abstract |
Research into rare diseases is becoming more common, with recognition of the significant diagnostic and therapeutic care gaps. Registries are considered a key research methodology to address rare diseases. This report describes the structure of the Rare UK Diseases Study (RUDY) platform that aims to improve research processes and address many of the challenges of carrying out rare musculoskeletal disease research. RUDY is an internet-based platform with online registration, initial verbal consent, online capture of patient reported outcome measures and events within a dynamic consent framework. The database structure, security and governance framework are described. There have been 380 participants recruited into RUDY with completed questionnaire rates in excess of 50 %. There has been one withdrawal and two participants have amended their consent options. The strengths of RUDY include low burden for the clinical team, low research administration costs with high participant recruitment and ease of data collection and access. This platform has the potential to be used as the model for other rare diseases globally. |
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 % |
|---|---|---|
| United Kingdom | 3 | 38% |
| Sierra Leone | 1 | 13% |
| Unknown | 4 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 4 | 50% |
| Science communicators (journalists, bloggers, editors) | 2 | 25% |
| Practitioners (doctors, other healthcare professionals) | 1 | 13% |
| Scientists | 1 | 13% |
Mendeley readers
The data shown below were compiled from readership statistics for 83 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 83 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 18 | 22% |
| Researcher | 12 | 14% |
| Student > Master | 8 | 10% |
| Professor | 6 | 7% |
| Student > Doctoral Student | 5 | 6% |
| Other | 12 | 14% |
| Unknown | 22 | 27% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 18 | 22% |
| Nursing and Health Professions | 6 | 7% |
| Biochemistry, Genetics and Molecular Biology | 4 | 5% |
| Psychology | 4 | 5% |
| Social Sciences | 4 | 5% |
| Other | 20 | 24% |
| Unknown | 27 | 33% |
Attention Score in Context
This research output has an Altmetric Attention Score of 8. 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 14 August 2018.
All research outputs
#4,565,407
of 25,497,142 outputs
Outputs from Orphanet Journal of Rare Diseases
#627
of 3,135 outputs
Outputs of similar age
#68,698
of 319,363 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#10
of 42 outputs
Altmetric has tracked 25,497,142 research outputs across all sources so far. Compared to these this one has done well and is in the 82nd percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,135 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.2. This one has done well, scoring higher than 80% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 319,363 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 78% of its contemporaries.
We're also able to compare this research output to 42 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 78% of its contemporaries.