https://padlet.com/nlibecans/orkambicf Evaluate the effectiveness of Orkambi treatment in Cystic Fibrosis patients en-us 2019-12-05 11:07:45 UTC 2026-01-15 23:43:54 UTC hello@padlet.com https://padlet.net/icons/png/1f48a.png nlibecans https://padlet.com/nlibecans/orkambicf/wish/425843588 Cystic Fibrosis transmembrane regulator: This protein acts as an ion channel; controlling the flow of chloride ions in and out of the cell.]]> 2019-12-19 11:52:17 UTC https://padlet.com/nlibecans/orkambicf/wish/425843588 nlibecans https://padlet.com/nlibecans/orkambicf/wish/441126432 -reduced liver function
-dyspnea, chest discomfort, abnormal respiration. 
-Hypertension.

]]> 2020-02-05 18:30:47 UTC https://padlet.com/nlibecans/orkambicf/wish/441126432 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444890530 improving lung function and ion transfer in F508del mutation in Cystic Fibrosis Transmembrane Regulator(CFTR)protein.]]> 2020-02-13 10:23:08 UTC https://padlet.com/nlibecans/orkambicf/wish/444890530 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444924008 Cause and effect of cystic fibrosis.
http://rc.rcjournal.com/content/respcare/54/5/595.full.pdf]]> 2020-02-13 12:06:23 UTC https://padlet.com/nlibecans/orkambicf/wish/444924008 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444928368 Overview of diagnosis, symptoms, treatment, research and expectations.
-increase in inflammation and infection.]]> 2020-02-13 12:22:33 UTC https://padlet.com/nlibecans/orkambicf/wish/444928368 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444929516 Fdel508 mutation; reduced CFTR proteins at cell surface and reduced function due to malformation. This causes ineffective and reduced ion transfer.
- impaired chloride transfer results in thick sticky mucous secretions/accumulations in bronchi and lungs. ]]> 2020-02-13 12:26:06 UTC https://padlet.com/nlibecans/orkambicf/wish/444929516 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444937464 Patient eligibility section 6.
- Must be over 2 years old and have mutation homozygous f508del and living in England.]]> 2020-02-13 12:49:01 UTC https://padlet.com/nlibecans/orkambicf/wish/444937464 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444953058 How lumacaftor/ivacaftor works.
"a systemic protein modulator"
increases CFTR effectiveness and function thus improving chloride ion transfer in and out of the cell. 
-reduction in mucous secretions and build up
-improved lung function
-weight gain
-nutrient absorption in gastrointestinal tract.

]]> 2020-02-13 13:23:00 UTC https://padlet.com/nlibecans/orkambicf/wish/444953058 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444954868 - Antibiotics: rifampin or rifabutin
-certain seizure medications.
-Sedatives/anti-anxiety: midazolam, triazolam.
- immunosuppressants
-St. John's Wart

]]> 2020-02-13 13:26:08 UTC https://padlet.com/nlibecans/orkambicf/wish/444954868 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444962389 section 3.13 explains reduced hospital visits by 61% compared to placebo group.
-5% had adverse reaction resulting in GP visit.

]]> 2020-02-13 13:38:53 UTC https://padlet.com/nlibecans/orkambicf/wish/444962389 nlibecans https://padlet.com/nlibecans/orkambicf/wish/444962748 pulmonary exacerbation 30-39% lower in Orkambi group compared to placebo group.]]> 2020-02-13 13:39:37 UTC https://padlet.com/nlibecans/orkambicf/wish/444962748 nlibecans https://padlet.com/nlibecans/orkambicf/wish/446512914 Common/very common:
- breast abnormalities
-diarrhoea
-dizziness
-ear discomfort
-flatulence
-GI discomfort
-headache
-irregular periods
-nausea
-rash
-ear infection/inflammation/damage
-vomiting
rare:
-gynaecomastia
-hepatic encephalopathy
-hepatitis cholestatic

]]> 2020-02-17 20:29:29 UTC https://padlet.com/nlibecans/orkambicf/wish/446512914 nlibecans https://padlet.com/nlibecans/orkambicf/wish/447110647 what it's like living with Cystic Fibrosis and what it Orkambi means to patients.]]> 2020-02-18 21:26:47 UTC https://padlet.com/nlibecans/orkambicf/wish/447110647 nlibecans https://padlet.com/nlibecans/orkambicf/wish/447119048 patient in study shows; 50% reduction in oral antibiotics, 61% reduction in IV antibiotics, 66% reduction in hospital days]]> 2020-02-18 21:47:43 UTC https://padlet.com/nlibecans/orkambicf/wish/447119048 nlibecans https://padlet.com/nlibecans/orkambicf/wish/447122610 explains physical differences taking orkambi.]]> 2020-02-18 21:58:07 UTC https://padlet.com/nlibecans/orkambicf/wish/447122610 nlibecans https://padlet.com/nlibecans/orkambicf/wish/447130453 Patient able to get funded Orkambi treatment; "life-changing"]]> 2020-02-18 22:25:27 UTC https://padlet.com/nlibecans/orkambicf/wish/447130453 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448523660 guidance for diagnosis and management of cystic fibrosis.]]> 2020-02-21 10:40:50 UTC https://padlet.com/nlibecans/orkambicf/wish/448523660 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448526311 Guidance in Orkambi treatment in patients over the age of 12. Published in 2016 prior to NHS authorisation.]]> 2020-02-21 10:54:13 UTC https://padlet.com/nlibecans/orkambicf/wish/448526311 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448535277 2020-02-21 11:36:54 UTC https://padlet.com/nlibecans/orkambicf/wish/448535277 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448566683 1. support people to make informed choices ti promote their well-being and recovery, assessing their motivation and capacity for change using appropriate therapeutic interventions.]]> 2020-02-21 13:31:52 UTC https://padlet.com/nlibecans/orkambicf/wish/448566683 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448567317 5. provides people, their families and carers with accurate information about their treatment and care, using repetition and positive reinforcement when undergoing a range of interventions.]]> 2020-02-21 13:33:26 UTC https://padlet.com/nlibecans/orkambicf/wish/448567317 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448567795 22. provide information and explanation to people, families and carers and responds appropriately to questions about their treatment and care.]]> 2020-02-21 13:34:49 UTC https://padlet.com/nlibecans/orkambicf/wish/448567795 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448568099 32. negotiates and advocates on behalf of people in their care and makes reasonable adjustments to the assessment, planning and delivery of their care.]]> 2020-02-21 13:35:36 UTC https://padlet.com/nlibecans/orkambicf/wish/448568099 nlibecans https://padlet.com/nlibecans/orkambicf/wish/448568632 Platform 5:
Improving safety and quality of care; identify risks to safety or experience and take appropriate action, putting the best interest, needs and preference of people first.]]> 2020-02-21 13:37:00 UTC https://padlet.com/nlibecans/orkambicf/wish/448568632