| Title |
Standard measures for sickle cell disease research: the PhenX Toolkit sickle cell disease collections
|
|---|---|
| Published in |
Blood Advances, December 2017
|
| DOI | 10.1182/bloodadvances.2017010702 |
| Pubmed ID | |
| Authors |
James R Eckman, Kathryn L Hassell, Wayne Huggins, Ellen M Werner, Elizabeth S Klings, Robert J Adams, Julie A Panepinto, Carol M Hamilton |
| Abstract |
Standard measures and common data elements for sickle cell disease (SCD) will improve the data quality and comparability necessary for cross-study analyses and the development of guidelines that support effective treatments and interventions. In 2014, the National Institutes of Health, National Heart, Lung, and Blood Institute (NHLBI) funded an Administrative Supplement to the PhenX Toolkit (consensus measures for Phenotypes and eXposures; https://www.phenxtoolkit.org/) to identify common measures to promote data comparability across SCD research. An 11-member Sickle Cell Disease Research and Scientific Panel provided guidance to the project, establishing a core collection of SCD-related measures and defining the scope of 2 specialty collections: (1) cardiovascular, pulmonary, and renal complications, and (2) neurology, quality-of-life, and health services. For each specialty collection, a working group of SCD experts selected high-priority measures using a consensus process that included scientific community input. The SCD measures were released into the Toolkit in August 2015. The 25 measures included in the core collection are recommended for use by all NHLBI-funded investigators performing human-subject SCD research. The 10 neurology, quality-of-life, and health services measures and 14 cardiovascular, pulmonary, and renal measures are recommended for use within these specialized research areas. For SCD and other researchers, PhenX measures will promote collaborations with clinicians and patients, facilitate cross-study analysis, accelerate translational research, and lead to greater understanding of SCD phenotypes and epigenetics. For clinicians, using PhenX measures will help elucidate the etiology, progression, and treatment of SCD, leading to improved patient care and quality of life. |
X Demographics
The data shown below were collected from the profiles of 18 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 States | 9 | 50% |
| Saudi Arabia | 2 | 11% |
| Russia | 1 | 6% |
| Netherlands | 1 | 6% |
| United Kingdom | 1 | 6% |
| Spain | 1 | 6% |
| Unknown | 3 | 17% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 10 | 56% |
| Practitioners (doctors, other healthcare professionals) | 4 | 22% |
| Scientists | 2 | 11% |
| Science communicators (journalists, bloggers, editors) | 2 | 11% |
Mendeley readers
The data shown below were compiled from readership statistics for 46 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 46 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Bachelor | 7 | 15% |
| Student > Ph. D. Student | 4 | 9% |
| Student > Postgraduate | 4 | 9% |
| Other | 4 | 9% |
| Student > Master | 4 | 9% |
| Other | 10 | 22% |
| Unknown | 13 | 28% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 13 | 28% |
| Nursing and Health Professions | 4 | 9% |
| Biochemistry, Genetics and Molecular Biology | 3 | 7% |
| Social Sciences | 3 | 7% |
| Pharmacology, Toxicology and Pharmaceutical Science | 2 | 4% |
| Other | 6 | 13% |
| Unknown | 15 | 33% |
Attention Score in Context
This research output has an Altmetric Attention Score of 14. 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 09 May 2018.
All research outputs
#2,397,791
of 24,510,033 outputs
Outputs from Blood Advances
#493
of 2,946 outputs
Outputs of similar age
#53,231
of 449,218 outputs
Outputs of similar age from Blood Advances
#29
of 97 outputs
Altmetric has tracked 24,510,033 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 90th percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,946 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 12.1. This one has done well, scoring higher than 83% 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 449,218 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 88% of its contemporaries.
We're also able to compare this research output to 97 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 71% of its contemporaries.