Category Archives: Cystic Fibrosis

FDA approves Vertex’s Orkambi, a new treatment for cystic fibrosis

The U.S. Food and Drug Administration today approved the first drug for cystic fibrosis directed at treating the cause of the disease in people who have two copies of a specific mutation. Orkambi (lumacaftor 200 mg/ivacaftor 125 mg) is now … Continue reading

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For cystic fibrosis patients with infected lungs, study may explain low blood oxygen levels

Researchers have defined a new bodily process in mice that may explain why blood oxygen levels are lower for patients with cystic fibrosis when they get a lung infection. “Infected areas of the lung are not as capable as healthy … Continue reading

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Active video games as an exercise tool for children with cystic fibrosis

J Cyst Fibros. 2013 Nov 1. pii: S1569-1993(13)00165-3. doi: 10.1016/j.jcf.2013.10.008. [Epub ahead of print] Active video games as an exercise tool for children with cystic fibrosis O’Donovan C, Greally P, Canny G, McNally P, Hussey J. Source: Discipline of Physiotherapy, … Continue reading

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Scientists pinpoint 105 additional genetic errors that cause cystic fibrosis

Of the over 1,900 errors already reported in the gene responsible for cystic fibrosis (CF), it is unclear how many of them actually contribute to the inherited disease. Now a team of researchers reports significant headway in figuring out which … Continue reading

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Cystic Fibrosis: Chronic antibiotic therapy linked to fewer nontuberculous mycobacterial infections

People with cystic fibrosis (CF) often take antibiotics, including the macrolide azithromycin, for long periods to help manage their condition. But some doctors feared that chronic macrolide use might predispose people with CF to nontuberculous mycobacterial (NTM) infections. To examine … Continue reading

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CF ALERT: Zicam Extreme Congestion Relief Nasal Gel: Recall – Contamination With Burkholderia Cepacia

AUDIENCE: Consumer ISSUE: Matrixx Initiatives notified the public of a recall of one lot of Zicam Extreme Congestion Relief nasal gel. Burkholderia cepacia was found in a single sample of the product taken from the affected lot. The problem was … Continue reading

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Ignorance epidemic springs up in Palo Alto as student with cystic fibrosis gene is forced to transfer

A young student has been ordered to transfer schools, apparently because he is carrying the cystic fibrosis gene. We abhor frivolous lawsuits, but here’s hoping that someone sues the living daylights out of everyone responsible for this and that it … Continue reading

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CF drug Kalydeco subject of FDA notification for safety reasons

The U.S. Food and Drug Administration (FDA) is notifying health care professionals, parents/caregivers, and patients in the cystic fibrosis (CF) community about a potential safety concern for cataract development in children with CF taking the medication Kalydeco (ivacaftor). A cataract … Continue reading

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Cystic fibrosis’s most common cause, a defective protein, fixed by researchers in lab

Researchers at the University of Iowa Carver College of Medicine have discovered a genetic process that can restore function to a defective protein, which is the most common cause of cystic fibrosis (CF). Cystic fibrosis is an inherited disease caused … Continue reading

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For young CF patients, concentrated saline therapy not effective

Concentrated saline therapy not effective in young children with cystic fibrosis NIH-funded study demonstrates importance of conducting pediatric clinical trials Inhaling concentrated saline (salt water) mist does not reduce how often infants and young children with cystic fibrosis (CF) need … Continue reading

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Ivacaftor, Kalydeco, a new drug for cystic fibrosis, gets FDA OK

Newswise — BIRMINGHAM, Ala. – The U.S. Food and Drug Administration today approved the first drug to treat the underlying cause of cystic fibrosis, ivacaftor – marketed under the name Kalydeco. Kalydeco is approved for people with CF ages 6 … Continue reading

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Early cystic fibrosis detected by bronchoalveolar lavage and LCI

Newswise — The lung clearance index (LCI) is a sensitive non-invasive marker of early lung disease in young children with cystic fibrosis (CF), according to a new study from Australian researchers. “We found that LCI is elevated early in children … Continue reading

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Cystic fibrosis: Andy Lipman has it, but it does not have him

Atlanta, GA) – “I have cystic fibrosis, but it will never have me.” For Andy Lipman that’s not a contrived inspirational catch-phrase, it’s what he lives every single day. He has the same deadly disease that took his sister’s life, … Continue reading

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In CF, inhaled dry powder mannitol improves lung function

Newswise — Adding inhaled dry powder mannitol to standard therapy for cystic fibrosis produced sustained improvement in lung function for up to 52 weeks, according to a new study. Along with the treatment’s efficacy and good safety profile, the convenience … Continue reading

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Cystic fibrosis patients’ lung function improves with VX-770

A new study has confirmed that the drug, ivacaftor (VX-770), significantly improves lung function in some people with cystic fibrosis (CF). The results of the phase III clinical trial study, “A CFTR Potentiator in Patients with Cystic Fibrosis and the … Continue reading

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Alzheimer’s, Asperger’s, CF storylines up for media awards

Newswise — Hollywood, Health & Society, a program of the Norman Lear Center at the University of Southern California (USC) Annenberg School for Communication & Journalism and the Centers for Disease Control and Prevention (CDC), are announcing eight finalists for … Continue reading

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Cystic fibrosis researchers find gene that makes disease worse

A team of international researchers, including Case Western Reserve University School of Medicine, have discovered regions of the genome that affect the severity of the genetic disease cystic fibrosis (CF), the most common lethal genetic disease affecting children in North … Continue reading

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Cystic fibrosis airway clearance may be aided by video games

Video games controlled by the player’s breath can encourage youths with cystic fibrosis to use techniques that can help keep their airways clearer, according to a study to be presented Saturday, April 30, at the Pediatric Academic Societies (PAS) annual … Continue reading

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Pancreatic drug struggling for FDA approval

An investigational pancreatic enzyme medication, liprotamase (Solpura) appears to be effective in treating pancreatic insufficiency — but FDA reviewers question whether the drug works as well as other products on the market. The FDA’s Gastrointestinal Advisory Committee meets Wednesday to … Continue reading

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Protein involved in cystic fibrosis also plays role in emphysema, chronic lung disease

A protein involved in cystic fibrosis (CF) also regulates inflammation and cell death in emphysema and may be responsible for other chronic lung diseases, according to Johns Hopkins researchers. The findings, published online in the December issue of The Journal … Continue reading

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