| Title |
Clinical Practice Guidelines for Rare Diseases: The Orphanet Database
|
|---|---|
| Published in |
PLOS ONE, January 2017
|
| DOI | 10.1371/journal.pone.0170365 |
| Pubmed ID | |
| Authors |
Sonia Pavan, Kathrin Rommel, María Elena Mateo Marquina, Sophie Höhn, Valérie Lanneau, Ana Rath |
| Abstract |
Clinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be difficult to identify through Internet searches and may vary in quality depending on the source and methodology used. In order to contribute to the improvement of the diagnosis, treatment and care of patients, Orphanet (www.orpha.net) has set up a procedure for the selection, quality evaluation and dissemination of CPGs, with the aim to provide easy access to relevant, accurate and specific recommendations for the management of RDs. This article provides an analysis of selected CPGs by medical domain coverage, prevalence of diseases, languages and type of producer, and addresses the variability in CPG quality and availability. CPGs are identified via bibliographic databases, websites of research networks, expert centres or medical societies. They are assessed according to quality criteria derived from the Appraisal of Guidelines, REsearch and Evaluation (AGREE II) Instrument. Only open access CPGs and documents for which permission from the copyright holders has been obtained are disseminated on the Orphanet website. From January 2012 to July 2015, 277 CPGs were disseminated, representing coverage of 1,122 groups of diseases, diseases or subtypes in the Orphanet database. No language restriction is applied, and so far 10 languages are represented, with a predominance of CPGs in English, French and German (92% of all CPGs). A large proportion of diseases with identified CPGs belong to rare oncologic, neurologic, hematologic diseases or developmental anomalies. The Orphanet project on CPG collection, evaluation and dissemination is a continuous process, with regular addition of new guidelines, and updates. CPGs meeting the quality criteria are integrated to the Orphanet database of rare diseases, together with other types of textual information and the appropriate services for patients, researchers and healthcare professionals in 40 countries. |
X Demographics
The data shown below were collected from the profiles of 13 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 | 3 | 23% |
| Switzerland | 1 | 8% |
| United Kingdom | 1 | 8% |
| Sweden | 1 | 8% |
| United States | 1 | 8% |
| Unknown | 6 | 46% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 12 | 92% |
| Practitioners (doctors, other healthcare professionals) | 1 | 8% |
Mendeley readers
The data shown below were compiled from readership statistics for 133 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 1 | <1% |
| Unknown | 132 | 99% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 22 | 17% |
| Student > Ph. D. Student | 17 | 13% |
| Student > Doctoral Student | 14 | 11% |
| Student > Master | 13 | 10% |
| Student > Bachelor | 8 | 6% |
| Other | 23 | 17% |
| Unknown | 36 | 27% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 32 | 24% |
| Biochemistry, Genetics and Molecular Biology | 23 | 17% |
| Agricultural and Biological Sciences | 11 | 8% |
| Pharmacology, Toxicology and Pharmaceutical Science | 4 | 3% |
| Nursing and Health Professions | 4 | 3% |
| Other | 19 | 14% |
| Unknown | 40 | 30% |
Attention Score in Context
This research output has an Altmetric Attention Score of 23. 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 03 November 2022.
All research outputs
#1,608,186
of 24,878,531 outputs
Outputs from PLOS ONE
#20,103
of 215,425 outputs
Outputs of similar age
#33,624
of 428,743 outputs
Outputs of similar age from PLOS ONE
#451
of 4,230 outputs
Altmetric has tracked 24,878,531 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 93rd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 215,425 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 15.7. This one has done particularly well, scoring higher than 90% 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 428,743 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 92% of its contemporaries.
We're also able to compare this research output to 4,230 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 89% of its contemporaries.