Standards of care are published statements that describe the level of care that the client with cystic fibrosis or other diseases can expect from nurses. Identifying the genetic basis of cystic fibrosis Cystic fibrosis CF is a genetic disorder long known to be inherited as an autosomal recessive character, and to be highly variable in its severity, duration, and spectrum of symptoms. Explain the play therapy is an intervention and should not be interrupted for vital signs. One further, somewhat surprising, feature of the CF licensing scheme was the humanitarian licensing of some of the same patents for developing ways to prevent or manage diarrheal diseases. If the technologies were successful, then the university would benefit in other areas, through advancing and enhancing its reputation and providing a royalty stream to support education and research. Which action should the primary nurse implement first?
Positions that historically required registered nurses will be filled by unlicensed personnel. This cell line is covered by a U of M patent, so if the CFF funded this type of research without sub-licensing rights, the funded company would have to apply for a license with the U of M to do their research. Part of the variability in CF is due to a large number of genetic mutations that have variable effects on CFTR protein function. CF is caused by mutations in the cystic fibrosis transmembrane conductance regulator CFTR gene on chromosome 7, which encodes a chloride ion channel. Although such a clause was not initially written into the non-exclusive license, the first licensee insisted that such a clause be added to the terms of the license agreement. National Center for Biotechnology Information , U.
Which statement by the mother supports the diagnosis of CF? The licensing strategy developed by the U of M and the Cysitc had a three-pronged approach intended to satisfy the needs of key stakeholders.
This meant that the license had to be affordable to small nonprofit operations. This agreement benefits the U of M since the CFF takes cxse the administrative burden of handling non-exclusive licenses, and it benefits the CFF by having a low sub-licensing fee agreement with the U of M.
Community resources often provide support groups for parents of children with CF.
Which adjustment will be required if Debbie has loose, fatty stools? Therefore, patenting made sense to the scientists, their nonprofit institutions, and disease advocacy groups.
Not much was known about whether a fibrossi protein-based therapeutic could be developed, since the function of the CFTR gene was not yet known, other than hints it was an ion channel for chloride.
HESI Case Studies–Pediatrics-Cystic Fibrosis (Debbie Baker)
The optimal test approach might depend in part on mutational complexity that was not known when the patent application was filed. What action by the nurse is warranted? The U of M gets a small payment if OneWorld Health sub-licenses to a developer, but gets no running royalties on products or services.
From — it was also co-funded by the US Department of Energy. Positions that historically required registered nurses will be filled by unlicensed personnel. Impact of gene patents and licensing practices on access to genetic testing for inherited susceptibility to cancer: That is, mutations affect a large protein pore responsible for conducting negatively charged chloride atoms through the cell membrane.
Food and Drug Administration FDA approval, companies researching therapeutic options would want some form of exclusivity to protect those long-term, large investments. What actions should the nurse educator take to address this?
Cystic Fibrosis Case Study by Teresa Vasquez on Prezi
What information will the nurse include when teaching about the sweat test? See other articles in PMC that cite the published article. Impact of gene patents and licensing practices on access fibtosis genetic testing for Alzheimer disease. Author information Copyright and License information Disclaimer. How about receiving a customized one? Some variants do not cause CF symptoms; others are quite severe.
This license is for research purposes only; the CFF license sfudy not for diagnostic purposes.
Pediatric Cystic Fibrosis Case Study
Support Center Support Center. Which item below correctly describes the U. Impact of gene patents and licensing practices on access to genetic testing for long QT syndrome. Collins also donated all of his patent royalties to the CFF, rather than accepting them as personal income.
Had CF diagnostic testing not become as accessible as it was, these life expectancy improvements may have been less impressive or happened later. The ethics of patenting DNA.
After ten years of working with the CFTR licensing strategy, Ritchie thinks that fibrisis is very little, if anything, that he would change about it, and that this strategy would be suitable for other universities and institutions to use:. Considerations for therapeutics were entirely different. Wide access to genetic testing and screening made it cysstic for states and hospitals to implement newborn screening programs; earlier detection of CF meant that patients could be started on nutritional supplementation sooner; and medical care providers gibrosis more aggressively intervene to prevent lung infections, a leading cause of death among CF patients.
In the process of preparing this case study, we found no evidence that the licensing practices employed by the patent holders were impeding access to genetic testing. And indeed the ivacaftor model will be held up as a success only if it generates sufficient revenue to warrant future similar investments, and if its high cost does not hinder utilization.
Identification of the cystic fibrosis gene: