| Title |
A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases
|
|---|---|
| Published in |
Journal of General Internal Medicine, July 2014
|
| DOI | 10.1007/s11606-014-2895-9 |
| Pubmed ID | |
| Authors |
Laura P. Forsythe, Victoria Szydlowski, Mohammad Hassan Murad, Stanley Ip, Zhen Wang, Tarig A. Elraiyah, Rachael Fleurence, David H. Hickam |
| Abstract |
Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. |
X Demographics
The data shown below were collected from the profiles of 12 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Canada | 3 | 25% |
| United States | 3 | 25% |
| Spain | 2 | 17% |
| Greece | 1 | 8% |
| Unknown | 3 | 25% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 11 | 92% |
| Scientists | 1 | 8% |
Mendeley readers
The data shown below were compiled from readership statistics for 139 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Sierra Leone | 1 | <1% |
| United States | 1 | <1% |
| Brazil | 1 | <1% |
| Unknown | 136 | 98% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 27 | 19% |
| Student > Master | 19 | 14% |
| Student > Ph. D. Student | 14 | 10% |
| Student > Doctoral Student | 11 | 8% |
| Student > Bachelor | 11 | 8% |
| Other | 23 | 17% |
| Unknown | 34 | 24% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 32 | 23% |
| Nursing and Health Professions | 16 | 12% |
| Social Sciences | 13 | 9% |
| Psychology | 10 | 7% |
| Biochemistry, Genetics and Molecular Biology | 9 | 6% |
| Other | 19 | 14% |
| Unknown | 40 | 29% |
Attention Score in Context
This research output has an Altmetric Attention Score of 19. 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 01 March 2018.
All research outputs
#1,800,648
of 24,387,992 outputs
Outputs from Journal of General Internal Medicine
#1,399
of 7,910 outputs
Outputs of similar age
#18,155
of 233,143 outputs
Outputs of similar age from Journal of General Internal Medicine
#18
of 102 outputs
Altmetric has tracked 24,387,992 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 7,910 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 21.9. This one has done well, scoring higher than 82% 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 233,143 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 102 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 83% of its contemporaries.