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Bone Deficits Seen at Distal Tibia in Adults With Cystic Fibrosis Bone Deficits Seen at Distal Tibia in Adults With Cystic Fibrosis
Adult patients with cystic fibrosis (CF) have decreased volumetric bone mineral density (vBMD) and stiffness in the distal tibia, compared with healthy individuals, according to new research.Reuters Health Information (Source: Medscape Orthopaedics Headlines)
Source: Medscape Orthopaedics Headlines - December 27, 2017 Category: Orthopaedics Tags: Diabetes & Endocrinology News Source Type: news

This baby was born from an embryo frozen 24 years ago
When Tina Gibson got married seven years ago, she knew it was unlikely that she would have children naturally. Her husband, 33-year-old Benjamin Gibson, had cystic fibrosis, a condition that can make men infertile, the couple told CNN. The East Tennessee couple decided they would eventually adopt a child instead — and that they would foster several children […]Related:FDA approves first gene therapy for an inherited diseaseThis model lost a leg because of an infection from tampons. Here’s what she wants you to know.Debate erupts within HHS about ‘words to avoid’ such as ‘...
Source: Washington Post: To Your Health - December 20, 2017 Category: Consumer Health News Source Type: news

She finally had a baby naturally — with a 24-year-old frozen embryo.
When Tina Gibson got married seven years ago, she knew it was unlikely that she would have children naturally. Her husband, 33-year-old Benjamin Gibson, had cystic fibrosis, a condition that can make men infertile, the couple told CNN. The East Tennessee couple decided they would eventually adopt a child instead — and that they would foster several children […]Related:FDA approves first gene therapy for an inherited diseaseThis model lost a leg because of an infection from tampons. Here’s what she wants you to know.Debate erupts within HHS about ‘words to avoid’ such as ‘...
Source: Washington Post: To Your Health - December 20, 2017 Category: Consumer Health News Source Type: news

New 'checkpoint' model that could identify potential drugs to treat genetic disorders
(University of Bradford) A new 'checkpoint' model which can be used to identify potential treatments for genetic disorders such as cystic fibrosis and Duchenne muscular dystrophy (DMD) has been proposed by a team of Bradford scientists. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - December 18, 2017 Category: International Medicine & Public Health Source Type: news

What is DIOS?
Discussion Cystic fibrosis (CF) is an autosomal recessive disorder caused by mutations in the cystic fibrosis transmembrane receptor (CFTR). It is found in the epithelium of the bronchi, intestine, pancreatic duct and biliary tree. It regulates chloride, bicarbonate and water secretion. The heterozygous state helps prevent against secretory diarrhea, but the homozygous state causes thickened secretions in the hollow tubes of the lungs and digestive tract. There are multiple mutations (> 2000) which have been currently classified into classes depending on their protein production and activity. CF patients generally are l...
Source: PediatricEducation.org - December 18, 2017 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Stunning gene therapy breakthrough driven by great dedication and graft | Robin McKie
We need more than ever to celebrate advances in medical science – though they may take years to emergeThere has been a surprising outbreak of the use of the c-word among medical researchers over the past few days. Normally cautious in their language, they have nevertheless been wielding the term “cure” when discussing the long-term potential of two separate treatments for inherited ailments that were announced last week. Such enthusiasm is striking.In one case, scientists based at St Bartholomew ’s, London – who have been working on the inherited bleeding disorder haemophilia A –outlined...
Source: Guardian Unlimited Science - December 17, 2017 Category: Science Authors: Robin McKie Tags: Medical research Science Genetics Biology Cystic fibrosis Society Huntington's disease Alzheimer's Dementia Source Type: news

Baby Born With Cystic Fibrosis After IVF Screening Blunder
Botched NHS test resulted in a child being born with cystic fibrosis, according to a new report that shines light on the UK's fertility sector (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - December 14, 2017 Category: Pharmaceuticals Authors: Helen Thomson, Contributor Source Type: news

Protein structure could unlock new treatments for cystic fibrosis
(University of Zurich) Biochemists at the University of Zurich have used cryo-electron microscopy to determine the detailed architecture of the chloride channel TMEM16A. This protein is a promising target for the development of effective drugs to treat cystic fibrosis. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - December 13, 2017 Category: International Medicine & Public Health Source Type: news

Daughter ’s neurosurgery inspires mom to give back
Danielle Parkman isn’t a doctor or nurse. In fact, she’s not a clinician of any kind. And yet every day she makes the lives of patients in the Boston Children’s Hospital Division of Pulmonary and Respiratory Diseases a little bit easier. As the Senior Administrative Associate for Pharmaceutical Benefits and Prior Authorization Specialist, Danielle is responsible for getting approvals for pharmacy benefits and prior authorizations for all pulmonology patients. It’s a daunting task, but she doesn’t take no for an answer. “I love my job, and I love fighting for my patients,” says Dani...
Source: Thrive, Children's Hospital Boston - December 5, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories Department of Neurology Division of Pulmonary and Respiratory Diseases Hydrocephalus Hydrocephalus Program Source Type: news

The Lower Airway Microbiota in Early CF Lung Disease The Lower Airway Microbiota in Early CF Lung Disease
What do we know about lower airway microbiota and its association with airway inflammation and pulmonary function in infants and children with cystic fibrosis?Thorax (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - December 1, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

Pneumonia symptoms could fought off by eating GARLIC, scientists reveal
DEADLY bacterial infections that cause chronic conditions like cystic fibrosis, pneumonia and the superbug MRSA, can be fought off by eating garlic, scientists have claimed. (Source: Daily Express - Health)
Source: Daily Express - Health - November 29, 2017 Category: Consumer Health News Source Type: news

Virtual reality used during cystic fibrosis treatment
People with cystic fibrosis are using virtual reality to distract them during treatment. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - November 24, 2017 Category: Consumer Health News Source Type: news

New cystic fibrosis test to simplify treatment decisions
Scientists have developed a new test to determine which cystic fibrosis treatment is best suited to an individual patient. (Source: Health News - UPI.com)
Source: Health News - UPI.com - November 21, 2017 Category: Consumer Health News Source Type: news

Health of people with cystic fibrosis shows positive trends in US and Canada
(University of Washington Health Sciences/UW Medicine) Research comparing cystic fibrosis patients in the United States and Canada showed that, although patients' nutritional status and lung function improved in both countries from 1990 to 2013, the US improvement rate was faster. Nutritional status and lung function are related to survival in cystic fibrosis. U.S. improvements may be due to implementation of newborn screening, quality improvement initiatives for the disease and better healthcare access under the Medicaid Children's Health Insurance Program, signed into federal law in 1997. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 21, 2017 Category: International Medicine & Public Health Source Type: news

Researchers identify how bacterium survives in oxygen-poor environments
(Columbia University) Columbia University biologists have revealed a mechanism by which bacterial cells in crowded, oxygen-deprived environments access oxygen for energy production, ensuring survival of the cell. The finding could explain how some bacteria, such as Pseudomonas aeruginosa (P. aeruginosa), are able to thrive in oxygen-poor environments like biofilms and resist antibiotics. P. aeruginosa biofilm infections are a leading cause of death for people suffering from cystic fibrosis, a genetic condition that affects the lungs and the digestive system. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 21, 2017 Category: International Medicine & Public Health Source Type: news

New simple test could help cystic fibrosis patients find best treatment
(University of North Carolina Health Care) While new CF drugs are life-changing for some patients, they don't work for everyone. Now, UNC and UAB researchers present a simple test that aims to predict which treatment is most likely to work for each patient, an approach known as personalized or precision medicine. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 21, 2017 Category: International Medicine & Public Health Source Type: news

Kudos launches solution to illegal sharing of copyright content
http://blog.growkudos.com/2017/11/15/kudos-solution-illegal-sharing-copyright-content Kudos, the award-winning service for maximizing the reach and impact of research publications, has announced the launch of its shareable PDF solution, which helps publishers prevent copyright infringement and reclaim lost usage from sharing of research articles on scholarly collaboration networks (SCNs). Authors of articles published by the American Thoracic Society, Emerald Publishing, FASEB and The IET can now use Kudos to create summary PDFs of their articles, for uploading to sites like ResearchGate and Academia.edu. The summary PDFs...
Source: News from STM - November 15, 2017 Category: Databases & Libraries Authors: STM Publishing News Tags: Editorial Featured Source Type: news

UAB research shows promise for treating cystic fibrosis
UAB research on a new two-drug combination for treating cystic fibrosis is gaining traction. The new drug therapy has been shown to improve lung function in patients with certain mutations of the CFTR gene, which is responsible for the disease.  UAB's findings, published in the New England Journal of Medicine, show the combinations of the drugs Tezacaftor and Ivacaftor improved lung fun ction by nearly 7 percent compared to a placebo in a subset of patients. The UAB study looked at over 200 cystic… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - November 8, 2017 Category: Biotechnology Authors: Tyler Patchen Source Type: news

Battle to get £100,000-a-year cystic fibrosis wonder drug
Campaigners hit out last week at health chiefs who have denied NHS England patients access to the £100,000-a-year medication because it is ‘not cost-effective’. (Source: the Mail online | Health)
Source: the Mail online | Health - November 4, 2017 Category: Consumer Health News Source Type: news

NICE's first guideline on cystic fibrosis endorses telemedicine
(Source: PharmacoEconomics and Outcomes News)
Source: PharmacoEconomics and Outcomes News - November 1, 2017 Category: Drugs & Pharmacology Source Type: news

People with cystic fibrosis could be monitored through phone or video messaging says NICE
Patients with cystic fibrosis could avoid having to travel to specialist clinics if health professionals could monitor them using phone or video messaging. (Source: NHS Networks)
Source: NHS Networks - October 26, 2017 Category: UK Health Source Type: news

DNA and RNA editing could cure up to 15,000 diseases
Scientists at MIT and Harvard have discovered a way to use CRISPR technology to cure cystic fibrosis. With this new gene editor, they can now fix any wrong letter in the genome. (Source: the Mail online | Health)
Source: the Mail online | Health - October 25, 2017 Category: Consumer Health News Source Type: news

Gene editing technology can now fix cystic fibrosis
Scientists at MIT and Harvard have discovered a way to use CRISPR technology to cure cystic fibrosis. With this new gene editor, they can now fix any wrong letter in the genome. (Source: the Mail online | Health)
Source: the Mail online | Health - October 25, 2017 Category: Consumer Health News Source Type: news

Some people with cystic fibrosis might live longer because of genetic mutations
(Boston Children's Hospital) Research suggests that genetic mutations to an 'epithelial sodium pathway' could protect against cystic fibrosis and its debilitating effects on the lungs. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - October 25, 2017 Category: International Medicine & Public Health Source Type: news

Literature review: the economic costs of lung disease and the cost effectiveness of policy and service interventions
Published evidence on the economic costs of lung disease (incl asthma, COPD, cystic fibrosis) and the cost-effectiveness of different NHS activities, programmes and campaigns to combat lung problems. (Source: Current Awareness Service for Health (CASH))
Source: Current Awareness Service for Health (CASH) - October 24, 2017 Category: Consumer Health News Source Type: news

North American Cystic Fibrosis Conference 2017
Date: Tuesday, October 24, 2017Year: 2017Location: Indianapolis, USAContent-type: current_conferences (Source: The Aspergillus Website - updates)
Source: The Aspergillus Website - updates - October 24, 2017 Category: Respiratory Medicine Authors: ROrritt Source Type: news

41st European Cystic Fibrosis Conference
Date: Tuesday, October 24, 2017Year: 2018Location: Belgrade, SerbiaContent-type: current_conferences (Source: The Aspergillus Website - updates)
Source: The Aspergillus Website - updates - October 24, 2017 Category: Respiratory Medicine Authors: ROrritt Source Type: news

Laboratory Diagnosis of Non-Tuberculous Mycobacterium Infections in Bronchiectasis Patients: Issues and Controversies
Non-tuberculous mycobacteria (NTM) are environmental microbes that can cause pulmonary infection and are especially problematic in bronchiectasis patients with or without cystic fibrosis (CF). Microbiological identification of NTM in these patients is difficult given the high microbial burden in the lungs and the need to differentiate between colonization and transient and true infection. Determining if and when to initiate antimicrobial treatment against this multi-drug-resistant group of organisms is also challenging. (Source: Clinical Microbiology Newsletter)
Source: Clinical Microbiology Newsletter - October 24, 2017 Category: Microbiology Authors: Kara J. Levinson, Peter H. Gilligan Source Type: news

The Bedside Nurse's Role at End of Life The Bedside Nurse's Role at End of Life
A woman with young children is dying from cystic fibrosis. How does the nurse best offer comfort and closure?Medscape Nurses (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - October 20, 2017 Category: Consumer Health News Tags: Nursing Viewpoint Source Type: news

The microbial anatomy of an organ
(University of California - San Diego) University of California San Diego researchers have developed the first 3-D spatial visualization tool for mapping 'omics' data onto whole organs. The tool helps researchers and clinicians understand the effects of chemicals, such as microbial metabolites and medications, on a diseased organ in the context of microbes that also inhabit the region. The work could advance targeted drug delivery for cystic fibrosis and other conditions where medications are unable to penetrate. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - October 19, 2017 Category: International Medicine & Public Health Source Type: news

Visualising Early Lung Disease in CF: The Emergence of MRI Visualising Early Lung Disease in CF: The Emergence of MRI
This editorial discusses the potential role of magnetic resonance imaging in the detection of early lung disease in patients with cystic fibrosis.Thorax (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - October 10, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

Mayo Clinic Q and A: Diagnosing cystic fibrosis
DEAR MAYO CLINIC: Recently, my niece was diagnosed with cystic fibrosis at 16. No one else in our family has been diagnosed with it, and, until recently, she didn?t have any symptoms. Now I?m worried about my kids, ages 4 and 6. Their newborn screenings for cystic fibrosis were negative, but should I have them [...] (Source: News from Mayo Clinic)
Source: News from Mayo Clinic - September 29, 2017 Category: Databases & Libraries Source Type: news

Flu warning: Your persistent cough could be THIS deadly genetic condition
FLU symptoms include a cough and stuffy nose, but they are also signs of a deadly genetic condition called cystic fibrosis. (Source: Daily Express - Health)
Source: Daily Express - Health - September 21, 2017 Category: Consumer Health News Source Type: news

Read Jimmy Kimmel ’s Moving Healthcare Monologue That Everyone’s Talking About
On Tuesday night, Jimmy Kimmel took to his late night show once more to talk healthcare — a subject near and dear to him personally, after his infant son dealt with heart surgery in the days after his birth last May. He delivered a heartfelt monologue then about the importance of adequate health coverage for all Americans, and in the wake of new healthcare legislation from Senators Bill Cassidy and Lindsay Graham, he returned to the subject with an emotional plea. I know you guys are going to find this hard to believe, but a few months ago, after my son had open heart surgery, which was something I spoke about on the...
Source: TIME.com: Top Science and Health Stories - September 20, 2017 Category: Consumer Health News Authors: Raisa Bruner Tags: Uncategorized Healthcare Jimmy Kimmel Late Night Television Source Type: news

Air Pollution Linked to MRSA Acquisition in Children With CF Air Pollution Linked to MRSA Acquisition in Children With CF
Young cystic fibrosis patients chronically exposed to air pollution may be more likely to acquire MRSA, a new study reports.BMC Pulmonary Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - September 20, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

Bacteremia and Fungemia in CF Patients With FPE Bacteremia and Fungemia in CF Patients With FPE
Are these pathogens present in cystic fibrosis patients experiencing febrile pulmonary exacerbation?BMC Pulmonary Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - September 15, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

The Emergence of Streptococcus anginosus Group as a Cystic Fibrosis Pathogen
Molecular profiling studies have identified potential emerging pathogens, such as Streptococcus anginosus group, that may play a role in cystic fibrosis (CF) lung disease by either directly causing infection or upregulating the virulence factors of classic CF pathogens, such as Pseudomonas aeruginosa. Routine surveillance of CF pathogens using traditional microbiology culture guides treatment and management of CF patients; however, routine CF culture protocols have not been modified to select for, detect, and further determine the role these emerging pathogens play in the progression of CF lung disease. (Source: Clinical M...
Source: Clinical Microbiology Newsletter - September 7, 2017 Category: Microbiology Authors: Emily M. Hill Source Type: news

Atlant Clinical to Complete Phase II Study in Patients with Cystic Fibrosis
Atlant Clinical has successfully completed an international, multicenter, randomised, placebo-controlled study in patients with cystic fibrosis. (Source: Pharmaceutical Technology)
Source: Pharmaceutical Technology - September 7, 2017 Category: Pharmaceuticals Source Type: news

ProQR concludes QR-010 dosing in Phase Ib trial to treat cystic fibrosis
The Netherlands-based ProQR Therapeutics has concluded dosing patients in a Phase Ib clinical trial of QR-010 for the treatment of patients with cystic fibrosis. (Source: Drug Development Technology)
Source: Drug Development Technology - August 30, 2017 Category: Pharmaceuticals Source Type: news

Scientists can now grow 'mini organs' for each patient
A Dutch lab is growing mini organs for cystic fibrosis patients to see how drugs would affect them without the risks of trying it. Els van de Heijden (pictured) is one of their patients. (Source: the Mail online | Health)
Source: the Mail online | Health - August 23, 2017 Category: Consumer Health News Source Type: news

Lab-made "mini organs" helping doctors treat cystic fibrosis
Doctors in the Netherlands are taking a novel approach to treat cystic fibrosis: They're growing miniature organs for every patient in the country. (Source: ABC News: Health)
Source: ABC News: Health - August 23, 2017 Category: Consumer Health News Tags: Health Source Type: news

Sweet! Sugar-coated probe yields better acid test
(Michigan Technological University) When our cells' acid-alkaline balance goes wrong, it can go wrong in a big way--think cancer and cystic fibrosis. New fluorescent probes make it easier to detect pH and sweetened the deal by adding sugar to his acid-sensitive probes, making them much friendlier to living tissue. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - August 11, 2017 Category: Cancer & Oncology Source Type: news

'Keep them well': New cystic fibrosis medications move closer to a cure
Results of a new drug trial suggest the next generation of medications, known as CFTR modulators, show potential to correct the genetic defect that causes cystic fibrosis and halt the disease's destructive progression. (Source: CBC | Health)
Source: CBC | Health - August 7, 2017 Category: Consumer Health News Tags: News/Health Source Type: news

Rugby Laboratories Issues Voluntary Nationwide Recall of Diocto Liquid and Diocto Syrup Manufactured By PharmaTech, LLC Due to Possible Product Contamination
Rugby ® Laboratories of Livonia, MI is voluntarily recalling all lots within the expiry of Diocto Liquid and Diocto Syrup, (docusate sodium solutions) manufactured by PharmaTech, LLC of Davie, FL due to a risk of product contamination with Burkholderia cepacia. If a product contains B. cepacia, its use c ould result in infections in patients with compromised immune systems and in patients with chronic lung conditions such as cystic fibrosis. Some of these infections may be serious or even life-threatening in the at-risk patient population. (Source: Food and Drug Administration)
Source: Food and Drug Administration - August 3, 2017 Category: Food Science Source Type: news

End of genetic diseases? Congenital heart disease removed from embryos for the first time
INHERITED illnesses from cancer to cystic fibrosis could be wiped out after congenital heart disease was removed from embryos for the first time. (Source: Daily Express - Health)
Source: Daily Express - Health - August 2, 2017 Category: Consumer Health News Source Type: news

Eloxx Pharmaceuticals Secures US$8 Million Investment from LSP, Increasing Total Raised in Series C to US$38 Million
Financing to support advancement of novel disease-modifying therapy targeting genetic diseases, including cystic fibrosis SAN DIEGO and REHOVOT, Israel, Aug. 2, 2017 -- (Healthcare Sales & Marketing Network) -- Sevion Therapeutics, Inc. (OTCQB: SVON) a... Biopharmaceuticals, Venture Capital Eloxx Pharmaceuticals, Cystic Fibrosis, Duchene Muscular Dystrophy (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - August 2, 2017 Category: Pharmaceuticals Source Type: news

Respiratory Microbiome May Influence Inflammation in CF
Less diversity linked to lower IL - 8 concentration, neutrophil count in infants with cystic fibrosis (Source: Pulmonary Medicine News - Doctors Lounge)
Source: Pulmonary Medicine News - Doctors Lounge - July 31, 2017 Category: Respiratory Medicine Tags: Infections, Pediatrics, Pharmacy, Pulmonology, Journal, Source Type: news

Sweat test developed to identify cystic fibrosis in infants
Researchers have developed a method to test the chemical composition of sweat to test for cystic fibrosis in screen-positive infants. (Source: Health News - UPI.com)
Source: Health News - UPI.com - July 31, 2017 Category: Consumer Health News Source Type: news

Scientists discover biomarkers which could lead to better treatments for CF pat
(McMaster University) Researchers have identified two new biological markers of cystic fibrosis (CF), a genetic disease which affects children and young adults, leaving them with lifelong health complications including digestive problems and persistent lung infections.The findings, published in the journal ACS Central Science, shed new light on the underlying mechanisms of CF and could lead to improved prognosis and better therapies for a disease which is quite variable, affecting different children in different ways, say researchers. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - July 31, 2017 Category: International Medicine & Public Health Source Type: news

Toward a better sweat test for babies with cystic fibrosis
(American Chemical Society) Cystic fibrosis (CF) is an incurable genetic disease in which patients have chronic lung infections. The sooner CF is diagnosed, the better the symptoms can be managed. But current tests can give ambiguous results that do not reflect disease progression. Today, in ACS Central Science, researchers reveal a new type of sweat test that can overcome this challenge. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - July 31, 2017 Category: International Medicine & Public Health Source Type: news