[PDF] Top 20 Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis
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Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis
... Sample and Recruitment T1 recruitment of mothers was prospective over 18 months. The full population of mothers of CF screen positive infants seen at SickKids, aged 4 to 6 weeks (ie, confirmatory testing ... See full document
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Parents' Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease
... of screening processes per se which may affect screening decisions for future children or other family ...with positive attitudes towards the components of the healthcare system associated with more ... See full document
13
Factors affecting the growth of infants diagnosed with cystic fibrosis by newborn screening
... variables which we were unable to collect data on in- cluded: parental height and weight, maternal smoking status, maternal diet during pregnancy, pulmonary exac- erbations, treatment regimen, nutritional support, adher- ... See full document
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Challenges in Cystic Fibrosis Newborn Screening and Recommendations for Primary Care Physicians
... of NBS with CFTR sequencing. This strategy yields the highest positive predictive value ever observed in CF NBS and allowed California to meet their goal to “minimize the burden of false positives….” On the ... See full document
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Parents' Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease
... initial positive NBS results are delivered to parents that influence their experience of this ...the positive NBS ...the parent and HP. Ideally, the result should not be given to a ... See full document
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Newborn Screening for Cystic Fibrosis in Wisconsin: Comparison of Biochemical and Molecular Methods
... Both screening procedures had very high ...The positive predictive value of the IRT/DNA screening protocol was ...the false-positive IRT/DNA pop- ulation revealed that the two-tier ... See full document
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Clarification of Laboratory and Clinical Variables That Influence Cystic Fibrosis Newborn Screening With Initial Analysis of Immunoreactive Trypsinogen
... Season of birth was determined from the infant’s birth date and defined as summer (June, July, and August), fall (September, October, and November), winter (De- cember, January, and February), and spring (March, April, ... See full document
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Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report
... that genetic counselors who practice at a children’s hos- pital should ensure that the parents’ PCPs are included in decisions about any parent testing.) Scheduling the genetic counseling with the sweat test ... See full document
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Psychosocial Risk Associated With Newborn Screening for Cystic Fibrosis: Parents’ Experience While Awaiting the Sweat-Test Appointment
... the screening process: (1) during prenatal care; (2) dur- ing the hospital stay after the infant’s birth; (3) when the primary care provider informs the family of the abnormal screening results; (4) ... See full document
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The health system impact of false positive newborn screening results for medium-chain acyl-CoA dehydrogenase deficiency: a cohort study
... a false posi- tive newborn screening test are short-term for the majority of parents, studies suggest that a small propor- tion continue to experience anxiety following diagnostic testing [30, ... See full document
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Parental Understanding of Newborn Screening for Cystic Fibrosis After a Negative Sweat-Test
... NBS results in ...a positive sweat-test result for CF were white and 133 (23%) were black (Illinois Depart- ment of Public Health, personal com- munication, October ...a positive result from their CF ... See full document
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Pubertal Height Growth and Adult Height in Cystic Fibrosis After Newborn Screening
... RESULTS: Meconium ileus (MI; n = 25) was associated with the worst pubertal growth and adult height, including 1 child who did not experience apparent PHV; children with pancreatic sufficiency ( n = 18) ... See full document
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Expanded Newborn Screening for Biochemical Disorders: The Effect of a False-Positive Result
... that false-positive results may lead to increased parental ...about newborn screening. Therefore, the negative ef- fects of false-positive newborn screening ... See full document
9
The False-Positive in Universal Newborn Hearing Screening
... 2 screening were identified, and a parent was con- tacted by ...the results of the screenings, parental anxiety level, subsequent treatment of and feelings toward the infant, and feelings about ... See full document
7
Newborn Screening for Cystic Fibrosis in California
... the cystic fi brosis specialty care centers (CFCs), analyzed and interpreted the data, and reviewed and revised the manuscript; Ms Bishop helped design the data collection instruments, helped coordinate data ... See full document
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Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: a qualitative study of current practice and policy challenges
... by newborn screening ...current screening proto- cols are expected to identify an equivalent or slightly higher number of ...of newborn SCD carriers detected are ...programmes, newborn ... See full document
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New York State Cystic Fibrosis Consortium: The First 2.5 Years of Experience With Cystic Fibrosis Newborn Screening in an Ethnically Diverse Population
... IRT results was the cutoff for per- forming a mutation ...the screening program in this ethnically diverse state, very high IRT (top ...screen positive and referred for a sweat test (Fig ... See full document
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False-Positive Newborn Screening for Cystic Fibrosis and Health Care Use
... Finally, results from these studies may also reflect the limitations in the clinical and table 4 Associations Between FP CF Newborn Screening Test and ... See full document
10
Parental Response to Repeat Testing of Infants with `False-Positive' Results in a Newborn Screening Program
... second interview after learning the normal results of the repeat test, both those parents informed of the initial abnormal result as well as those not informed were less.. anxious and de[r] ... See full document
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The Need for Vigilance: The Case of a False-Negative Newborn Screen for Cystic Fibrosis
... the cystic fibrosis transmembrane conductance regulator protein (CFTR) and may result in severe chronic lung dis- ease, poor growth, and ...negative newborn screening (NBS) result. In Minnesota, ... See full document
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