You are seeing a free-to-access but limited selection of the activity Altmetric has collected about this research output.
Click here to find out more.
X Demographics
Mendeley readers
Attention Score in Context
| Title |
Court-ordered access to treatment of rare genetic diseases: Fabry Disease in the state of Rio Grande do Sul, Brazil
|
|---|---|
| Published in |
Ciência & Saúde Coletiva, October 2012
|
| DOI | 10.1590/s1413-81232012001000020 |
| Pubmed ID | |
| Authors |
Dailor Sartori, Paulo Gilberto Cogo Leivas, Mônica Vinhas de Souza, Bárbara Corrêa Krug, Giacomo Balbinotto, Ida Vanessa Doederlein Schwartz |
| Abstract |
Court-ordered access to high-cost drugs for rare genetic diseases, such as Fabry Disease (alpha-galactosidase-A deficiency), is a growing phenomenon as yet lacking systematic study. An observational, cross-sectional and retrospective study was conducted to characterize the lawsuits related to access to treatment for Fabry Disease by Enzyme Replacement Therapy in the State of Rio Grande do Sul prior to 2007. The study identified 13 lawsuits and 17 plaintiffs, 11 requesting alfa and 6 betagalsidase. The State of RS, the Federal Government, and 5 municipalities figured as defendants, in the form of joinder of parties or otherwise. There were 13 requests for interlocutory relief of which 12 were granted, and 2 sentences were handed down, both favorable. "Risk of death" was alleged by doctors in 4 prescriptions and by lawyers in the 13 lawsuits. The data suggest the lack of discussions combining aspects of medical efficacy and safety, cost-effectiveness, economic impact, and legal and constitutional arguments, which requires a specific policy for rare genetic diseases to standardize access to treatment. |
X Demographics
The data shown below were collected from the profile of 1 X user who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Spain | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 47 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Brazil | 1 | 2% |
| Unknown | 46 | 98% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 10 | 21% |
| Student > Bachelor | 10 | 21% |
| Student > Postgraduate | 5 | 11% |
| Professor | 4 | 9% |
| Researcher | 3 | 6% |
| Other | 7 | 15% |
| Unknown | 8 | 17% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 10 | 21% |
| Nursing and Health Professions | 8 | 17% |
| Social Sciences | 4 | 9% |
| Pharmacology, Toxicology and Pharmaceutical Science | 3 | 6% |
| Business, Management and Accounting | 3 | 6% |
| Other | 7 | 15% |
| Unknown | 12 | 26% |
Attention Score in Context
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 27 October 2012.
All research outputs
#20,655,488
of 25,373,627 outputs
Outputs from Ciência & Saúde Coletiva
#1,507
of 2,034 outputs
Outputs of similar age
#158,278
of 202,127 outputs
Outputs of similar age from Ciência & Saúde Coletiva
#24
of 34 outputs
Altmetric has tracked 25,373,627 research outputs across all sources so far. This one is in the 10th percentile – i.e., 10% of other outputs scored the same or lower than it.
So far Altmetric has tracked 2,034 research outputs from this source. They receive a mean Attention Score of 3.8. This one is in the 12th percentile – i.e., 12% 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 202,127 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 10th percentile – i.e., 10% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 34 others from the same source and published within six weeks on either side of this one. This one is in the 11th percentile – i.e., 11% of its contemporaries scored the same or lower than it.