Description
Articles de périodiques scientifiques
Général
- Translational Research in Cystic Fibrosis: From Bench to Beside
- The Impact of Air Pollution on the Course of Cystic Fibrosis: A Review
- Hemoptysis and the Risk for Lung Transplant or Death without Transplant in Individuals with Cystic Fibrosis in the United States
- Telemedicine and cystic fibrosis: Do we still need face-to-face clinics?
- The effect of TGF-β1 polymorphisms on pulmonary disease progression in patients with cystic fibrosis.
- Corneal opacification, an atypical presentation of cystic fibrosis: a case report and review of the literature.
- New Concepts in the Pathogenesis of Cystic Fibrosis-Related Diabetes.
- Cystic fibrosis year in review 2021
- Results of Lung Transplantations Among Cystic Fibrosis Patients: A Single-Center Study
- Clinical outcomes of a large cohort of individuals with the F508del/5T;TG12 CFTR genotype
Diagnostic et évaluation
- Prevalence and Determinants of Wheezing and Bronchodilatation in Children With Cystic Fibrosis: A Retrospective Cohort Study
- Development and internal validation of a prognostic model of 2-year death or lung transplant for cystic fibrosis
- A Public Dialogue to Inform the Use of Wider Genomic Testing When Used as Part of Newborn Screening to Identify Cystic Fibrosis
- Metabolomic Biomarkers to Predict and Diagnose Cystic Fibrosis Pulmonary Exacerbations: A Systematic Review
- Defining and identifying early-onset lung disease in cystic fibrosis with cumulative clinical characteristics
- Does newborn screening improve early lung function in cystic fibrosis?
- Cystic Fibrosis and Diagnostic Imaging.
- Cardiac involvement in cystic fibrosis evaluated using cardiopulmonary magnetic resonance.
- Investigating Nontuberculous Mycobacteria Transmission at the Colorado Adult Cystic Fibrosis Program.
- Can continuous glucose monitoring predict cystic fibrosis-related diabetes and worse clinical outcome?
Traitement
- The effect of antibiotic changes during treatment of cystic fibrosis pulmonary exacerbations
- Change in exercise capacity measured by Cardio-pulmonary Exercise Testing (CPET) in Danish people with cystic fibrosis after initiation of treatment with Lumacaftor/Ivacaftor and Tezacaftor/Ivacaftor
- Use of mucoactive agents in cystic fibrosis: A consensus survey of Italian specialists
- CFTR Modulators in People with Cystic Fibrosis: Real-World Evidence in France
- Poor Tolerability of Cystic Fibrosis Transmembrane Conductance Regulator Modulator Therapy in Lung Transplant Recipients
- Coefficient of Fat Absorption to Measure the Efficacy of Pancreatic Enzyme Replacement Therapy in People With Cystic Fibrosis: Gold Standard or Coal Standard?
- Elexacaftor-Tezacaftor-Ivacaftor Treatment Reduces Abdominal Symptoms in Cystic Fibrosis-Early results Obtained With the CF-Specific CFAbd-Score
- Exercise versus airway clearance techniques for people with cystic fibrosis
- One Size Does Not Fit All: The Past, Present and Future of Cystic Fibrosis Causal Therapies
- Changing paradigms in the treatment of gastrointestinal complications of cystic fibrosis in the era of cystic fibrosis transmembrane conductance regulator modulators.
Nutrition
- Eating Disorders and Disordered Eating Behaviors in Cystic Fibrosis: A Neglected Issue
- Magnesium Status and Calcium/Magnesium Ratios in a Series of Cystic Fibrosis Patients
- Nutrition management in adults with cystic fibrosis
- Body Mass Index and Clinical Outcomes in Persons Living With Cystic Fibrosis-Is Bigger Always Better?
- Obesity in Cystic fibrosis: prevalence, trends and associated factors data from the US cystic fibrosis foundation patient registry
- Association of Body Mass Index With Clinical Outcomes in Patients With Cystic Fibrosis: A Systematic Review and Meta-analysis.
- Utilization of the Healthy Eating Index in Cystic Fibrosis.
- Effects of Exercise on Nutritional Status in People with Cystic Fibrosis: A Systematic Review.
- The Changing Landscape of Nutrition in Cystic Fibrosis: The Emergence of Overweight and Obesity.
Expériences des patients et des institutions
- How I Cope With Loneliness While Living With Chronic Illness
- Depression and anxiety prevalence in people with cystic fibrosis and their caregivers: a systematic review and meta-analysis
- Satisfaction and Concerns with Telemedicine Endocrine Care of Patients with Cystic Fibrosis
- Being affiliated to a cystic fibrosis centre is important for parents' everyday life
- A medication adherence–enhancing simulation intervention in pediatric cystic fibrosis.
- Paths to Motherhood for Women with Cystic Fibrosis
- Parenting Children with Cystic Fibrosis: Developmental Acquisition of Expertise
- Parenthood challenged by cystic fibrosis. Experience of affected parents
- Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF
- "The Stakes Are Higher"- Patient and Caregiver Perspectives on Cystic Fibrosis Research and Personalized Medicine
Association professionnelles
Fibrose kystique Canada
- Earlier this week, Quebec released its Rare Disease Policy which aims to expand care and services and improve care pathways for rare diseases in the province. Much work remains to be done, but this is a step forward. Read the policy here (in French only): bit.ly/3aBEu2o
- We’ve revamped our Clinical Trial Finder! Now, you can easily search for clinical trials that are currently enrolling across Canada, learn more about the clinical trials CF Canada is supporting, search for opportunities near you and more! bit.ly/3MGo72A
- Read our 20201-2022 Impact Report! We celebrate the inspiring stories of people impacted by CF and reflect on our work last year, made possible through the dedication of our donors and supporters. bit.ly/3kJ6KlP
- INESSS has delayed its review of Trikafta for Quebecers aged 6+. Their review is now expected to be complete in Dec. 2022. This delay is unacceptable. CF Canada calls on INESSS to expedite the process. Act now, WRITE to you elected official: bit.ly/3K5upH3
- Many Canadian children and adults with CF are closer to accessing Trikafta. CADTH released its draft recommendation to fund the life-changing CF drug for Canadians aged 6+ and removed restrictive 90% lung function criteria. Learn more: bit.ly/3sL86AI
- Our 2020 Trends Report shows a 60% decrease in the number of lung transplants in 2020. Is this an early sign of promise from Trikafta? Read more in our report bit.ly/3hCsaPI
- Promising news. Kalydeco has been approved by Health Canada for children aged 4 months to 18 (weighing at least 5kg) with the R117H mutation. This approval will enable approximately 25 additional people to be eligible for Kalydeco. bit.ly/3ur5V5n
- Our 2020 Trends Report shows an increase in obesity in adults living with CF over the last 25 years. Is this the first of many new realities for an aging population? Read more in our report bit.ly/3hCsaPI
- Despite previous commitments, today’s federal budget had no mention of funding for drugs for rare diseases. CF Canada is dismayed and will hold this government to account and demand better for the CF community
- Today, Health Canada has approved Trikafta for children aged 6 to 11 with at least one F508del mutation. This is an important step towards re-writing the story for children and adults with CF. Learn more here: bit.ly/3Eyqfq9
Cystic Fibrosis Foundation
- Overseas travel can be a challenge, even for the most experienced of travelers. If you have cystic fibrosis and are considering traveling abroad, early planning can help. on.cff.org/3Mzm7su
- Your body needs vitamins to help it grow, function, and fight off infection. If you have cystic fibrosis, understand which food are vitamin-rich to incorporate into your diet. on.cff.org/3aYbKRQ
- When you're not feeling your best, it can be hard to find motivation to exercise. Meagan Tenyer, an adult living with cystic fibrosis, shares how she finds creative ways to exercise and keep her strength up. on.cff.org/3NY6L2j
- Nurses play a critical role in caring for people with cystic fibrosis. On #NationalNursesDay, we thank all nurses for everything they do to provide care and support for the CF community.
- Most people with cystic fibrosis are diagnosed by age 2, thanks to newborn screening tests. However, it is possible to be diagnosed as an adult. Katie K. shares her experience of being diagnosed with CF at 22 years old. on.cff.org/3ywF2Rg
- The CF Foundation and the @NIH will hold a virtual scientific workshop from June 2-3 to discuss the challenges and opportunities for #cysticfibrosis research in the era of highly effective modulators. Save your seat and register by May 30. #CFResearch on.cff.org/3w54ATW
- Did you know? Digestion problems occur in 90% of people with cystic fibrosis. Thick mucus keeps digestive enzymes from the pancreas from getting to the intestines where they are needed to help digest food. #CFAwarenessMonth
- Chris Raybuck, a practicing pharmacist and an adult with cystic fibrosis, shares how he is protecting himself from COVID-19 as an individual who is post-transplant. on.cff.org/3wp2lLj
- CW: This blog discusses eating disorders. Weight gain is typically a cause for celebration for those with cystic fibrosis. For Emma Selden, an adult with CF, gaining weight on IV steroids to treat her cystic fibrosis was nothing to celebrate. on.cff.org/3NtTUEf
- CF Foundation Funds Expansion of Clinical Trial Program for Potential Nonsense Mutations Therapy
European Cystic Fibrosis Society
Actualités
- Reducing Trikafta Dose May Ease Mental Side Effects, Study Reports
- Newly Launched Biotech to Develop Lung-specific Gene Therapy Vectors
- Trikafta : souffle d'espoir pour les enfants atteints de fibrose kystique - TVA Nouvelles
- Catherine St-Laurent jouera une jeune femme atteinte de fibrose kystique au petit écran cet hiver - Noovo Moi
- 9 Things Cystic Fibrosis Taught Me About Life
- LungFit GO’s Inhaled NO Safely Improves Quality of Life: Study
- Fibrose kystique: vers de meilleurs traitements et des poumons plus sains - udemnouvelles
- Fibrose kystique Canada: un lave-auto à Coaticook souhaite amasser 30 000 $ pour la cause - Le Progrès de Coaticook
- Une année toute spéciale pour deux personnes atteintes de la fibrose kystique - Radio-Canada.ca
- Trikafta: un nouveau médicament pour la fibrose kystique qui change une vie - Le Journal de Montréal
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