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X Demographics
Mendeley readers
Attention Score in Context
| Title |
The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
|
|---|---|
| Published in |
European Journal of Human Genetics, February 2018
|
| DOI | 10.1038/s41431-017-0085-z |
| Pubmed ID | |
| Authors |
Sabina Gainotti, Paola Torreri, Chiuhui Mary Wang, Robert Reihs, Heimo Mueller, Emma Heslop, Marco Roos, Dorota Mazena Badowska, Federico de Paulis, Yllka Kodra, Claudio Carta, Estrella Lopez Martìn, Vanessa Rangel Miller, Mirella Filocamo, Marina Mora, Mark Thompson, Yaffa Rubinstein, Manuel Posada de la Paz, Lucia Monaco, Hanns Lochmüller, Domenica Taruscio |
| Abstract |
In rare disease (RD) research, there is a huge need to systematically collect biomaterials, phenotypic, and genomic data in a standardized way and to make them findable, accessible, interoperable and reusable (FAIR). RD-Connect is a 6 years global infrastructure project initiated in November 2012 that links genomic data with patient registries, biobanks, and clinical bioinformatics tools to create a central research resource for RDs. Here, we present RD-Connect Registry & Biobank Finder, a tool that helps RD researchers to find RD biobanks and registries and provide information on the availability and accessibility of content in each database. The finder concentrates information that is currently sparse on different repositories (inventories, websites, scientific journals, technical reports, etc.), including aggregated data and metadata from participating databases. Aggregated data provided by the finder, if appropriately checked, can be used by researchers who are trying to estimate the prevalence of a RD, to organize a clinical trial on a RD, or to estimate the volume of patients seen by different clinical centers. The finder is also a portal to other RD-Connect tools, providing a link to the RD-Connect Sample Catalogue, a large inventory of RD biological samples available in participating biobanks for RD research. There are several kinds of users and potential uses for the RD-Connect Registry & Biobank Finder, including researchers collaborating with academia and the industry, dealing with the questions of basic, translational, and/or clinical research. As of November 2017, the finder is populated with aggregated data for 222 registries and 21 biobanks. |
X Demographics
The data shown below were collected from the profiles of 29 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 | 10% |
| Spain | 3 | 10% |
| France | 3 | 10% |
| Italy | 2 | 7% |
| Netherlands | 2 | 7% |
| Canada | 1 | 3% |
| Saudi Arabia | 1 | 3% |
| India | 1 | 3% |
| New Zealand | 1 | 3% |
| Other | 0 | 0% |
| Unknown | 12 | 41% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 24 | 83% |
| Scientists | 3 | 10% |
| Practitioners (doctors, other healthcare professionals) | 2 | 7% |
Mendeley readers
The data shown below were compiled from readership statistics for 64 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 64 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 16 | 25% |
| Student > Ph. D. Student | 11 | 17% |
| Other | 9 | 14% |
| Professor | 4 | 6% |
| Student > Doctoral Student | 3 | 5% |
| Other | 6 | 9% |
| Unknown | 15 | 23% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 18 | 28% |
| Computer Science | 8 | 13% |
| Biochemistry, Genetics and Molecular Biology | 7 | 11% |
| Agricultural and Biological Sciences | 6 | 9% |
| Pharmacology, Toxicology and Pharmaceutical Science | 2 | 3% |
| Other | 8 | 13% |
| Unknown | 15 | 23% |
Attention Score in Context
This research output has an Altmetric Attention Score of 21. 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 21 March 2020.
All research outputs
#1,818,536
of 25,595,500 outputs
Outputs from European Journal of Human Genetics
#305
of 3,720 outputs
Outputs of similar age
#41,476
of 449,522 outputs
Outputs of similar age from European Journal of Human Genetics
#9
of 69 outputs
Altmetric has tracked 25,595,500 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 92nd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,720 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 10.5. This one has done particularly well, scoring higher than 91% 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 449,522 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 90% of its contemporaries.
We're also able to compare this research output to 69 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 88% of its contemporaries.