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Provides guidance on inheritance patterns of cystic fibrosis, carrier testing, and reproductive options for families of affected children.
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
Price: 8 / 10 USD
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The product description is provided for reference. Actual content and formatting may differ slightly.
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
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.
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
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
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
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
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
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
Year:
2025-2026
Region / City:
South Carolina
Topic:
Legislation, Prenatal Rights
Document Type:
Bill
Body:
South Carolina General Assembly
Author:
Reps. Harris, Magnuson, Chumley, Burns, Long, Beach, Huff, Rankin, Sanders, Frank, Lastinger
Target Audience:
Legislators, Legal Professionals, General Public
Period of Effect:
2025-2026
Approval Date:
TBD
Date of Changes:
TBD
Year:
2025-2026
Region / City:
Hawaii
Theme:
Health, Early Childhood, Maternal and Infant Health
Document Type:
Evaluation Report
Organ / Institution:
Hawaii Department of Health, Family Health Services Division
Author:
Not specified
Target Audience:
Community leaders, non-profit organizations, state departments, medical office providers, health centers, doulas, midwives, mental health consultants, policy advocates, family leadership developers
Period of Implementation:
10/27/25 to 7/29/26
Approval Date:
Not specified
Date of Changes:
Not specified
Note:
Year
SNP Array Platform:
Whole Genome Infinium CytoSNP-850K v1.2 Illumina BeadChip array.
Analysis Software:
BlueFuse Multi v4.4
Genome Build:
GRCh37
Average Backbone Resolution:
approximately 50kb
Average Targeted Gene Resolution:
approximately 10kb
Incidental Findings:
Yes
Sample Type:
Amniotic Fluid, CVS, Parental Blood
Interpretation of Results:
Yes
Testing Limitations:
Yes
Contact Information:
Yes
Year:
2023
Region / City:
Singapore
Field:
Child and Maternal Health
Document Type:
Proposal
Institution:
A*STAR
Author:
Not specified
Target Audience:
Researchers, Institutions, Funders
Period of Effect:
Not specified
Approval Date:
Not specified
Date of Changes:
July 2023
Year:
2021
Region / City:
Wisconsin
Topic:
Postpartum Care, Prenatal Care Coordination
Document Type:
Assessment Tool
Institution:
Department of Health Services, Division of Public Health
Target Audience:
Healthcare Providers, Prenatal Care Providers
Period of Validity:
Not specified
Approval Date:
Not specified
Revision Date:
Not specified
Year:
2023
Region / City:
North Carolina
Subject:
Prenatal SSRIs, Infant Development, Negative Affect
Document Type:
Research Paper
Organization:
University of North Carolina at Chapel Hill
Author:
Gabrielle Adams
Target Audience:
Researchers, Medical Professionals
Period of Validity:
N/A
Approval Date:
N/A
Date of Changes:
N/A
Year:
2023
Region / City:
Connecticut
Topic:
Prenatal Substance Exposure, Child Welfare, Family Care Plans
Document Type:
Policy Guidelines
Agency / Institution:
Department of Children and Families (DCF), Connecticut
Author:
Connecticut State Government
Target Audience:
Healthcare Providers, Child Welfare Professionals
Effective Period:
Ongoing
Approval Date:
Not specified
Revision Date:
Not specified
Date of Notification:
2023
Note:
Year
Topic:
Prenatal Exercise, Maternal Health
Document Type:
Study Report
Year:
2025
Region / City:
United States
Topic:
Prenatal Health, Neurodevelopmental Disorders, Medication Safety
Document Type:
Narrative Review
Institution:
U.S. Department of Health and Human Services, U.S. Food and Drug Administration
Author:
Not specified
Target Audience:
Healthcare Providers, Researchers, Pregnant Individuals
Effective Period:
Ongoing
Approval Date:
September 2025
Modification Date:
September 2025
Field:
Fetal cardiology
Topic:
Prenatal prediction of hypoplastic left heart syndrome (HLHS)
Document type:
Figure captions
Imaging modality:
Ultrasound (four-chamber view)
Analytical approach:
Multimodal nomogram
Machine learning models:
Decision Tree (DT), Random Forest (RF), Support Vector Machine (SVM), XGBoost
Neural network architecture:
Residual Variational Autoencoder (RVAE)
Data types:
Demographic characteristics; morphological cardiac characteristics; ultrasound image features
Key anatomical structures:
Left atrium (LA); right atrium (RA); left ventricle (LV); right ventricle (RV)
Evaluation methods:
ROC curve analysis; Decision Curve Analysis (DCA); cross-correlation analysis
Visualization methods:
Grad-CAM heatmaps; box plots; workflow diagrams
Study population:
Fetuses undergoing prenatal ultrasound examination
Example gestational ages:
25 weeks gestation; 27 weeks gestation
Clinical focus:
Prenatal risk assessment of hypoplastic left heart syndrome
Year:
2018
Region:
United States
Topic:
Prenatal substance exposure, neonatal health, early childhood education
Document type:
Educational resource kit
Organization:
Zero to Three, KCCTO-KITS, U.S. Department of Health & Human Services
Author:
Multiple contributors, including Child Welfare Information Gateway, CDC, Forray, Greer, Patrick et al.
Target audience:
Early care and education providers, childcare professionals, healthcare workers
Period covered:
2000–2018
Date published:
2018
References:
CDC (2018), Zero to Three (2012, 2018), Patrick et al. (2015), Kim & Stabler (n.d.), Greer (2017), Forray (2016), Kozhimannil et al. (2017), Child Welfare Information Gateway (2014)
Format:
Virtual kit with PDFs, guides, videos, and training links
Context description:
Comprehensive educational source detailing the prevalence, symptoms, and care considerations for infants prenatally exposed to legal and illegal substances, including guidance for early childhood providers on interventions and family support.
Year:
2023
Region / City:
Wisconsin
Subject:
Prenatal Care Coordination
Document Type:
Form
Organization:
Department of Health Services, State of Wisconsin
Author:
Not specified
Target Audience:
Medicaid Providers
Period of Validity:
Ongoing
Approval Date:
Not specified
Modification Date:
Not specified