Disease advocacy organizations have long played an important role in the continuum from basic science to therapy development in rare disease research. PXE International has led the field in innovative ways, venturing into specific activities that have traditionally been conducted by scientists. As lay founders, we have engaged in gene discovery, gene patenting, diagnostic test development, epidemiological studies, clinical trials, and therapy research and development. This article will describe the steps that we took, and the ways in which we have scaled these efforts for the larger community.
This research output has an Altmetric Attention Score of 1. 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 26 May 2016.
All research outputs
#17,689,573
of 22,711,645 outputs
Outputs from Frontiers in Genetics
#6,029
of 11,756 outputs
Outputs of similar age
#210,175
of 280,736 outputs
Outputs of similar age from Frontiers in Genetics
#219
of 319 outputs
Altmetric has tracked 22,711,645 research outputs across all sources so far. This one is in the 19th percentile – i.e., 19% of other outputs scored the same or lower than it.
So far Altmetric has tracked 11,756 research outputs from this source. They receive a mean Attention Score of 3.7. This one is in the 40th percentile – i.e., 40% of its peers scored the same or lower than it.
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 280,736 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 22nd percentile – i.e., 22% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 319 others from the same source and published within six weeks on either side of this one. This one is in the 26th percentile – i.e., 26% of its contemporaries scored the same or lower than it.
