Danielle Goetz
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View article: Cystic fibrosis foundation position paper: Redefining the CF care model
Cystic fibrosis foundation position paper: Redefining the CF care model Open
Specialized care is provided to people with cystic fibrosis (pwCF) by interdisciplinary teams nested within the CF Foundation's accredited care center network. This network allows for standardization of the care model, implementation of cl…
View article: Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team
Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team Open
Interdisciplinary teams care for people with cystic fibrosis (pwCF) at specialized treatment centers. These teams have laid the foundation for the cystic fibrosis (CF) care model responsible for gains in health outcomes and quality of life…
View article: Genetic counseling access and service delivery in New York State is variable for parents of infants with complex <i>CFTR</i> genotypes conferring uncertain phenotypes
Genetic counseling access and service delivery in New York State is variable for parents of infants with complex <i>CFTR</i> genotypes conferring uncertain phenotypes Open
Background New York State (NYS) utilizes a three‐tiered cystic fibrosis newborn screening (CFNBS) algorithm that includes cystic fibrosis transmembrane conductance regulator ( CFTR ) gene sequencing. Infants with >1 CFTR variant of potenti…
View article: Variability in evaluation and follow‐up of newborns with CRMS/CFSPID in New York State
Variability in evaluation and follow‐up of newborns with CRMS/CFSPID in New York State Open
The authors declare no conflict of interest. The data that support the findings of this study are available on request from the corresponding author.
View article: New York Cystic Fibrosis Newborn Screening Consortium Quality Improvement: Focus on Parent and Pediatrician Education and Develop a Statewide Standard of Care for CF-Related Metabolic Syndrome infants.
New York Cystic Fibrosis Newborn Screening Consortium Quality Improvement: Focus on Parent and Pediatrician Education and Develop a Statewide Standard of Care for CF-Related Metabolic Syndrome infants. Open
Background: CFTR-Related Metabolic Syndrome/ Cystic Fibrosis Screen Positive, Inconclusive Diagnosis (CRMS/CFSPID) is the diagnosis in infants who have a positive Cystic Fibrosis (CF) newborn screen (NBS), 2 CF-causing mutations, and borde…
View article: Airway Clearance after Highly Effective CFTR Modulators: Normalizing Life and Reducing Treatment Burden
Airway Clearance after Highly Effective CFTR Modulators: Normalizing Life and Reducing Treatment Burden Open
Objectives: Airway clearance therapy (ACT) is an important component of therapy for cystic fibrosis (CF) but is associated with significant treatment burden. Highly effective CFTR modulator therapy (HEMT) has improved pulmonary function fo…
View article: Systematic depression and anxiety screening for patients and caregivers: implementation and process improvement in a cystic fibrosis clinic
Systematic depression and anxiety screening for patients and caregivers: implementation and process improvement in a cystic fibrosis clinic Open
Introduction Depression and anxiety are common. Rates are significantly higher in cystic fibrosis (CF), and impact health outcomes. Screening is recommended, but is difficult to implement/sustain annually in a busy CF centre. The aim was t…
View article: Review of CFTR Modulators 2020
Review of CFTR Modulators 2020 Open
CFTR (cystic fibrosis transmembrane conductance regulator) modulators are small molecules that directly change the CFTR protein, improving function of the CFTR chloride channel. Beginning in 2012 with the FDA approval of the first CFTR mod…
View article: Pulmonary findings in infants with cystic fibrosis during the first year of life: Results from the Baby Observational and Nutrition Study (BONUS) cohort study
Pulmonary findings in infants with cystic fibrosis during the first year of life: Results from the Baby Observational and Nutrition Study (BONUS) cohort study Open
Importance Treatment recommendations for infants with CF standardize care, but most surveillance or treatment guidance of pulmonary manifestations are consensus‐based due to sparse evidence. Objective To report observations about pulmonary…
View article: A case of sulfhemoglobinemia in a child with chronic constipation
A case of sulfhemoglobinemia in a child with chronic constipation Open
Sulfhemoglobinemia is a rare condition in which a sulfur atom oxidizes the heme moiety in hemoglobin, making the hemoglobin incapable of carrying oxygen and leading to hypoxia and cyanosis. This condition has been described in patients tak…