What response reflects that the nurse values the principle of beneficence? When and Which Ones are Necessary? One of the benefits of this arrangement for the U of M is that the CFF handles all the administrative aspects of non-exclusive licenses for CFF research collaborations. Lap-Chee Tsui and Dr. After ten years of working with the CFTR licensing strategy, Ritchie thinks that there 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:.
Author manuscript; available in PMC Nov Only total US patients are estimated to have the requisite mutations. Had CF diagnostic testing not become as accessible as it was, these life expectancy improvements may have been less impressive or happened later. An early diagnosis is the first step in effectively managing the disease, and genetic testing has been used in carrier screening, prenatal genetic testing, and diagnosis. Make arrangements to meet with Paula privately at the first opportunity. Update on carrier screening for cystic fibrosis.
Check it out https: Fibrosiss is a simple, painless, reliable test that measures the chloride in sweat. But the U of M did not want to exclusively license the gene itself, because that would block development of alternative delivery and insertion systems for gene transfer, as well as using the CFTR gene or CFTR protein as therapeutic targets.
To assist in the transition to home care, Sarah and her mother received support from a nurse case manager and clinical pharmacist who both were employed by the specialty pharmacy. These healthcare professionals worked in tandem to provide medication education and care coordination during the treatment regimen, and medication administration was provided by a home care infusion nurse. Author information Copyright and License information Disclaimer.
Cystic Fibrosis Amidst the Zest for Life in Youth
Ccase license is for research purposes only; the CFF license is not for diagnostic purposes. 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.
Ritchie argues that this clause helped maintain the long-term viability of the CFTR licensing structure by serving as a valuable tool during negotiations with companies. In Januarythe Food and Drug Administration approved ivacaftor to treat the roughly four percent of CF patients with the p.
Xtudy of the benefits of this arrangement for the U of M is that the CFF handles all the administrative aspects of caee licenses for CFF research collaborations.
The CFF was founded in and has grown to become a savvy non-profit organization with the staff and resources required to take on the administrative burden of sub-licensing; not all diseases have such sophisticated patient advocacy organizations with the resources to take on this burden.
Cystic Fibrosis Case Study by Teresa Vasquez on Prezi
Which nursing intervention would be appropriate? A client is diagnosed with Cushing syndrome. Interaction with other genes and medical management of symptoms, like taking measures to prevent infections, add to mutational variability to make the clinical course of CF unpredictable. Which rationale best supports this referral? 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.
GD mutation who are over 6 years old, although it is now being tested for other uses cystkc in children as young as 2. Had CF diagnostic testing not become stuyd accessible as it was, these life expectancy improvements may have been less impressive or happened later.
Join our CME mailing list! Today, patients with CF have an average life span of 38 years, and some patients live into their 60s.
The Language of Life: Licensing the CFTR patents was also a tool for managing the quality of genetic testing on at least one occasion 2. Which action should the primary nurse implement first? Myasthenia Gravis Part 2 Posted on: Explain that Debbie fibfosis receive all routine childhood immunizations.
Identification of the cystic fibrosis gene: Which clinical manifestation does the nurse expect to increase in a client with Cushing syndrome? The final therapeutic patent is exclusively controlled by Vertex with a royalty agreement to CFFbut if the CFTR DNA sequence, method, and mutation patents had been exclusively licensed, developing and using ivacaftor would have been contingent on clearing diagnostic rights, making the situation more complex.
Mutated CFTR protein casd in a buildup of thick, viscous mucus in the lungs, digestive tract, and reproductive system.
The terms for these two agreements were different: 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. As genetic mapping technologies improved, especially in the s with the discovery and implementation of restriction fragment length polymorphisms, the pace of discovery rapidly increased.
Which statement by the mother supports the diagnosis of CF? Diarrheal disease is a major cause of mortality in resource-poor regions, killing an estimated 1. Food and Drug Administration FDA approval, companies researching therapeutic options would want some form of exclusivity to protect those long-term, large investments.