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The study evaluates the performance of the EQ-5D-5L in assessing disease severity and quality of life in cystic fibrosis patients, comparing its validity against the CFQoL.
Year: 2023
Region / City: United Kingdom
Theme: Health-related quality of life, Cystic fibrosis
Document Type: Research Article
Author: Rana Altabee, Siobhan B. Carr, Jaince Abbott, Rory Cameron, Daniel Office, Nicholas J. Simmonds, Jennifer A. Whitty, David Turner, Garry Barton
Target Audience: Researchers, healthcare professionals, policy makers
Period of Study: July 2020 – March 2021
Approval Date: 2023
Date of Changes: None
Price: 8 / 10 USD
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Genetic relatedness and host specificity of Pseudomonas aeruginosa isolates from cystic fibrosis and non-cystic fibrosis patients
Year: 2014
Region / city: Qatar
Topic: Medical Research
Document Type: Research Article
Author(s): Atqah AbdulWahab, Saad J Taj-Aldeen, Emad Ibrahim, Shaikha H Abdulla, Ramees Muhammed, Irshad Ahmed, Yasmine Abdeen, Omnia Sadek, Marawan Abu-Madi
Target Audience: Medical professionals, researchers in infectious diseases
Date of approval: 2014
Note: Contextual description
Giant exophytic cystic adenomyosis with a levonorgestrel containing intrauterine device out of the uterine cavity after uterine myomectomy: A case report
Year: 2020
Region / City: Zhejiang Province, China
Field: Gynecology
Document Type: Case Report
Organization / Institution: Zhejiang University School of Medicine, Women’s Hospital
Authors: Zhou Y, Zheng-Yun Chen, Xin-Mei Zhang
Target Audience: Medical professionals, researchers in gynecology
Period of validity: N/A
Date of approval: N/A
Date of changes: N/A
Date received: September 2, 2019
Date revised: November 28, 2019
Date accepted: December 13, 2019
Date published online: January 6, 2020
Keywords: Cystic adenomyosis, Dysmenorrhea, Levonorgestrel containing intrauterine device, Myomectomy, Case report
URL: https://www.wjgnet.com/2307-8960/full/v8/i1/188.htm
DOI: https://dx.doi.org/10.12998/wjcc.v8.i1.188
Context: This is a medical case report detailing a rare instance of giant exophytic cystic adenomyosis with a levonorgestrel-containing intrauterine device out of the uterine cavity following uterine myomectomy.
Correlation between patient-derived intestinal organoids and clinical responses to CFTR modulators in people with cystic fibrosis homozygous for F508del
Authors: Noelia Rodriguez Mier; Senne Cuyx; Kris De Boeck; Marijke Proesmans; Mieke Boon; Lieven Dupont; Kaline Arnauts; Elke De Wachter; Stephanie Van Biervliet; Monique Lequesne; Vicky Nowé; Hedwige Boboli; Anabela Santo Ramalho; François Vermeulen; on behalf of the Belgian Organoid Project
Affiliations: KU Leuven; University Hospital Leuven; University Hospital Brussels; Ghent University Hospital; Antwerp University Hospital; GZA Hospital; CHR Citadelle
Country: Belgium
Research field: Cystic fibrosis; CFTR modulators; organoid research; personalized medicine
Study population: 60 people with cystic fibrosis homozygous for F508del
Genetic focus: F508del CFTR mutation (homozygous)
Interventions studied: Elexacaftor/tezacaftor/ivacaftor; Tezacaftor/ivacaftor
Methods: Patient-derived intestinal organoids from rectal biopsies; forskolin-induced swelling assay; comparison with clinical outcomes
Clinical outcomes assessed: Lung function; sweat chloride levels; body weight; pulmonary exacerbations
Type of document: Scientific research article
Source: PubMed
DOI / Identifier: 40883119
Rotational Team Lead Physiotherapist Respiratory Medicine, Acute Medicine & Cystic Fibrosis
Year: 2023
Region / City: Royal Devon & Exeter Hospital, Wonford, UK
Topic: Healthcare, Physiotherapy
Document Type: Job Description
Organization / Institution: Royal Devon University Healthcare NHS Foundation Trust
Author: N/A
Target Audience: Healthcare professionals, physiotherapists
Period of Validity: N/A
Approval Date: N/A
Amendment Date: N/A
The genetics of cystic fibrosis and prenatal options: information for patients, parents and carers
Year: 2025
Organization: Alder Hey Children’s NHS Foundation Trust
Department: Department of Respiratory Medicine
Document type: Patient information leaflet
Target audience: Patients, parents and carers of children with cystic fibrosis
Topic: Genetics of cystic fibrosis, carrier testing, reproductive options
Review date: March 2025
Contact: Tel: 0151 228 4811, www.alderhey.nhs.uk
Location: Liverpool, United Kingdom
Cystic Fibrosis: Causes, Treatments, and Management Strategies
Year: 2016
Author: Tamia Jackson
Date: March 11, 2016
Period/Class: 5th period
Topic: Cystic Fibrosis
Document Type: Educational overview
Intended Audience: Students
Key Subjects: Genetic causes, airway clearance, inhaled medications, nutrition, fitness, CFTR modulators, lung transplantation
Related Conditions: Fibrocystic Disease of the pancreas, Mucoviscidosis
Medical Note: There is no cure for Cystic Fibrosis
Application Form for PASS / PAES Studies Submitted to the European Cystic Fibrosis Society Patient Registry (ECFSPR)
Year: Not specified
Region / Area: Europe
Subject: Post-authorisation safety and efficacy studies in cystic fibrosis registries
Document Type: Application form
Organization: European Cystic Fibrosis Society Patient Registry (ECFSPR)
Related Organization: European Medicines Agency (EMA)
Applicant Type: Marketing Authorisation Holder
Purpose: Submission of requests for registry data for PASS / PAES studies
Required Attachments: Study protocol; Statistical analysis plan
Submission Method: Email submission to [email protected]
Key Sections: Applicant details; Study information; Cohort definition; Statistical methods; Data requirements
Population Scope: Patients included in the European Cystic Fibrosis Society Patient Registry
Historical Data Availability: 2008–2023
Fee Structure: €5,000 handling; €25,000 review and feasibility assessment; €5,000 application modification
Governance Note: Individual country applications outside ECFSPR governance may apply separate fees
Cystic Fibrosis Center Hospitalization Guidelines and Procedures
Year: 2026
Location: University of Cincinnati Hospital, 8 East Unit
Subject: Cystic Fibrosis inpatient care and hospital protocols
Document Type: Patient guidance / hospital procedure
Institution: UC Hospital Pulmonary Consult Service
Author: CF Nurse Practitioner Angela Oder
Target Audience: CF patients and their families
Admission Requirements: Direct or scheduled CF admissions
Infection Control: Droplet & Contact isolation, personal protective equipment required
Dietary Guidelines: High calorie diet (3000 cal/day), extended menu for CF patients
Medical Monitoring: Vital signs every 8 hours, weight 2–4 times per week, glucose monitoring as needed
Therapy and Exercise: 4 respiratory therapy sessions/day, encouraged physical activity, home IV setup guidance upon discharge
Follow-up: Appointment within 2 weeks post-discharge
Topics: EQ-5D-5L adolescences cystic