7 results on '"Sari Edelman"'
Search Results
2. Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository.
- Author
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Marci K Sontag, Joshua I Miller, Sarah McKasson, Ruthanne Sheller, Sari Edelman, Careema Yusuf, Sikha Singh, Deboshree Sarkar, Joseph Bocchini, Joan Scott, Jelili Ojodu, and Yvonne Kellar-Guenther
- Subjects
Medicine ,Science - Abstract
BackgroundNewborn screening (NBS) aims to achieve early identification and treatment of affected infants prior to onset of symptoms. The timely completion of each step (i.e., specimen collection, transport, testing, result reporting), is critical for early diagnosis. Goals developed by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) for NBS timeliness were adopted (time-critical results reported by five days of life, and non-time-critical results reported by day seven), and implemented into a multi-year quality improvement initiative (NewSTEPS 360) aimed to decrease the time to result reporting and intervention.MethodsThe NBS system from specimen collection through reporting of results was assessed (bloodspot specimen collection, specimen shipping, sample testing, and result reporting). Annual data from 25 participating NBS programs were analyzed; the medians (and interquartile range, IQR) of state-specific percent of specimens that met the goal are presented.ResultsThe percent of specimens collected before 48 hours of life increased from 95% (88-97%) in 2016 to 97% (IQR 92-98%) in 2018 for the 25 states, with 20 (80%) of programs collecting more than 90% of the specimens within 48 hours of birth. Approximately 41% (IQR 29-57%) of specimens were transported within one day of collection. Time-critical result reporting in the first five days of life improved from 49% (IQR 26-74%) in 2016 to 64% (42%-71%) in 2018, and for non-time critical results from 64% (IQR 58%-78%) in 2016 to 81% (IQR 68-91%) in 2018. Laboratories open seven days a week in 2018 reported 95% of time-critical results within five days, compared to those open six days (62%), and five days (45%).ConclusionNBS programs that participated in NewSTEPs 360 made great strides in improving timeliness; however, ongoing quality improvement efforts are needed in order to ensure all infants receive a timely diagnosis.
- Published
- 2020
- Full Text
- View/download PDF
3. Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States
- Author
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Sari Edelman, Hiral Desai, Trey Pigg, Careema Yusuf, and Jelili Ojodu
- Subjects
newborn screening ,congenital adrenal hyperplasia ,NewSTEPs ,Pediatrics ,RJ1-570 - Abstract
Newborn screening (NBS) is a state-based public health program that aims to identify newborns at risk of certain disorders in the first days after birth to prevent permanent disability or death. Disorders on the Health and Human Services Federal Advisory Committee’s Recommended Uniform Screening Panel (RUSP) have been adopted by most state NBS programs; however, each state mandates specific disorders to be screened and implements their own system processes. Congenital adrenal hyperplasia (CAH) was added to the RUSP in 2005, and currently all 53 NBS programs universally screen for it. This paper provides a landscape of CAH screening in the United States, utilizing data voluntarily entered by state NBS programs in the Newborn Screening Technical assistance and Evaluation Program data repository. Data reported encompasses NBS state profile data (follow-up, disorder testing and the reporting of processes and methodologies for screening), quality indicator data (timeliness of CAH NBS) and confirmed cases. This comprehensive landscape analysis compares the CAH NBS systems across the US. This is vital in ultimately ensuring that newborns with CAH at risk of salt crisis receive appropriate intervention in a timely manner.
- Published
- 2020
- Full Text
- View/download PDF
4. Infants with Congenital Disorders Identified Through Newborn Screening — United States, 2015–2017
- Author
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Cynthia F. Hinton, Scott D. Grosse, Sarah McKasson, Jelili Ojodu, Carla D. Cuthbert, Sari Edelman, Stuart K. Shapira, Marcus Gaffney, Marci K. Sontag, Careema Yusuf, Joshua I. Miller, Sikha Singh, and Yvonne Kellar-Guenther
- Subjects
Pediatrics ,medicine.medical_specialty ,Health (social science) ,Epidemiology ,Hearing loss ,Health, Toxicology and Mutagenesis ,Infant health ,Disease ,Cystic fibrosis ,Congenital Abnormalities ,03 medical and health sciences ,Neonatal Screening ,0302 clinical medicine ,Health Information Management ,030225 pediatrics ,Prevalence ,medicine ,Humans ,National level ,Full Report ,030212 general & internal medicine ,Newborn screening ,business.industry ,Public health ,Infant, Newborn ,General Medicine ,medicine.disease ,United States ,Dried blood spot ,medicine.symptom ,business - Abstract
Newborn screening (NBS) identifies infants at risk for congenital disorders for which early intervention has been shown to improve outcomes (1). State public health programs are encouraged to screen for disorders on the national Recommended Uniform Screening Panel (RUSP), which increased from 29 disorders in 2005 to 35 in 2018.* The RUSP includes hearing loss (HL) and critical congenital heart defects, which can be detected through point-of-care screening, and 33 disorders detected through laboratory screening of dried blood spot (DBS) specimens. Numbers of cases for 33 disorders on the RUSP (32 DBS disorders and HL) reported by 50 U.S. state programs were tabulated. The three subtypes of sickle cell disease (SCD) listed as separate disorders on the RUSP (S,S disease; S,beta-thalassemia; and S,C disease) were combined for the current analysis, and the frequencies of the resulting disorders were calculated relative to annual births. During 2015-2017, the overall prevalence was 34.0 per 10,000 live births. Applying that frequency to 3,791,712 live births in 2018,† approximately 12,900 infants are expected to be identified each year with one of the disorders included in the study. The most prevalent disorder is HL (16.5 per 10,000), and the most prevalent DBS disorders are primary congenital hypothyroidism (CH) (6.0 per 10,000), SCD (4.9 per 10,000), and cystic fibrosis (CF) (1.8 per 10,000). Notable changes in prevalence for each of these disorders have occurred since the previous estimates based on 2006 births (2). The number of infants identified at a national level highlights the effect that NBS programs are having on infant health through early detection, intervention, and potential improved health, regardless of geographic, racial/ethnic, or socioeconomic differences.
- Published
- 2020
5. The Landscape of Severe Combined Immunodeficiency Newborn Screening in the United States in 2020: A Review of Screening Methodologies and Targets, Communication Pathways, and Long-Term Follow-Up Practices
- Author
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Trey Pigg, Ruthanne Sheller, Sari Edelman, Careema Yusuf, John G Boyle, Brian Fitzek, Emma Griffin, Alissa Huston, Sikha Singh, and Jelili Ojodu
- Subjects
0301 basic medicine ,lcsh:Immunologic diseases. Allergy ,medicine.medical_specialty ,Long term follow up ,newborn screening (NBS) ,communication pathways ,Immunology ,Aftercare ,long-term follow-up ,03 medical and health sciences ,Neonatal Screening ,0302 clinical medicine ,Stakeholder Participation ,medicine ,Humans ,Immunology and Allergy ,Healthcare Disparities ,Practice Patterns, Physicians' ,Quality Indicators, Health Care ,Original Research ,Severe combined immunodeficiency ,Newborn screening ,education ,business.industry ,Communication ,Public health ,Infant, Newborn ,food and beverages ,severe combined immunodeficiency ,medicine.disease ,Long-Term Care ,Quality Improvement ,United States ,030104 developmental biology ,Health Care Surveys ,Family medicine ,Educational resources ,embryonic structures ,business ,lcsh:RC581-607 ,030215 immunology - Abstract
Severe combined immunodeficiency (SCID) is T cell development disorders in the immune system and can be detected at birth. As of December 2018, all 53 newborn screening (NBS) programs within the United States and associated territories offer universal screening for SCID. The Association of Public Health Laboratories (APHL), along with the Immune Deficiency Foundation (IDF), surveyed public health NBS system laboratory and follow-up coordinators regarding their NBS program’s screening methodologies and targets, protocols for stakeholder notifications, and long-term follow-up practices. This report explores the variation that exists across NBS practices, revealing needs for efficiencies and educational resources across the NBS system to ensure the best outcomes for newborns.
- Published
- 2020
6. Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States
- Author
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Hiral Desai, Trey Pigg, Careema Yusuf, Jelili Ojodu, and Sari Edelman
- Subjects
medicine.medical_specialty ,Newborn screening ,business.industry ,newborn screening ,Public health ,Advisory committee ,lcsh:RJ1-570 ,food and beverages ,Obstetrics and Gynecology ,lcsh:Pediatrics ,Permanent disability ,medicine.disease ,Article ,Immunology and Microbiology (miscellaneous) ,Family medicine ,embryonic structures ,Pediatrics, Perinatology and Child Health ,medicine ,Landscape analysis ,congenital adrenal hyperplasia ,Congenital adrenal hyperplasia ,NewSTEPs ,business ,Human services - Abstract
Newborn screening (NBS) is a state-based public health program that aims to identify newborns at risk of certain disorders in the first days after birth to prevent permanent disability or death. Disorders on the Health and Human Services Federal Advisory Committee&rsquo, s Recommended Uniform Screening Panel (RUSP) have been adopted by most state NBS programs, however, each state mandates specific disorders to be screened and implements their own system processes. Congenital adrenal hyperplasia (CAH) was added to the RUSP in 2005, and currently all 53 NBS programs universally screen for it. This paper provides a landscape of CAH screening in the United States, utilizing data voluntarily entered by state NBS programs in the Newborn Screening Technical assistance and Evaluation Program data repository. Data reported encompasses NBS state profile data (follow-up, disorder testing and the reporting of processes and methodologies for screening), quality indicator data (timeliness of CAH NBS) and confirmed cases. This comprehensive landscape analysis compares the CAH NBS systems across the US. This is vital in ultimately ensuring that newborns with CAH at risk of salt crisis receive appropriate intervention in a timely manner.
- Published
- 2020
7. Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository
- Author
-
Yvonne Kellar-Guenther, Marci K. Sontag, Sikha Singh, Sari Edelman, Joseph A. Bocchini, Joshua I. Miller, Careema Yusuf, Deboshree Sarkar, Jelili Ojodu, Ruthanne Sheller, Sarah McKasson, and Joan Scott
- Subjects
Health Screening ,medicine.medical_specialty ,Research Facilities ,Quality management ,Physiology ,Health Care Providers ,Maternal Health ,Science ,Advisory committee ,Advisory Committees ,Research and Analysis Methods ,Timely diagnosis ,Labor and Delivery ,Neonatal Screening ,Interquartile range ,Medicine and Health Sciences ,Humans ,Medicine ,Public and Occupational Health ,Child ,Newborn screening ,Health Care Policy ,Multidisciplinary ,business.industry ,Infant, Newborn ,Time to result ,Recem nascido ,Biology and Life Sciences ,Neonates ,Obstetrics and Gynecology ,Quality Improvement ,Body Fluids ,Health Care ,Blood ,Specimen collection ,Emergency medicine ,Birth ,Women's Health ,Anatomy ,Laboratories ,Research Laboratories ,business ,Screening Guidelines ,Research Article ,Government Laboratories ,Developmental Biology - Abstract
BackgroundNewborn screening (NBS) aims to achieve early identification and treatment of affected infants prior to onset of symptoms. The timely completion of each step (i.e., specimen collection, transport, testing, result reporting), is critical for early diagnosis. Goals developed by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) for NBS timeliness were adopted (time-critical results reported by five days of life, and non-time-critical results reported by day seven), and implemented into a multi-year quality improvement initiative (NewSTEPS 360) aimed to decrease the time to result reporting and intervention.MethodsThe NBS system from specimen collection through reporting of results was assessed (bloodspot specimen collection, specimen shipping, sample testing, and result reporting). Annual data from 25 participating NBS programs were analyzed; the medians (and interquartile range, IQR) of state-specific percent of specimens that met the goal are presented.ResultsThe percent of specimens collected before 48 hours of life increased from 95% (88-97%) in 2016 to 97% (IQR 92-98%) in 2018 for the 25 states, with 20 (80%) of programs collecting more than 90% of the specimens within 48 hours of birth. Approximately 41% (IQR 29-57%) of specimens were transported within one day of collection. Time-critical result reporting in the first five days of life improved from 49% (IQR 26-74%) in 2016 to 64% (42%-71%) in 2018, and for non-time critical results from 64% (IQR 58%-78%) in 2016 to 81% (IQR 68-91%) in 2018. Laboratories open seven days a week in 2018 reported 95% of time-critical results within five days, compared to those open six days (62%), and five days (45%).ConclusionNBS programs that participated in NewSTEPs 360 made great strides in improving timeliness; however, ongoing quality improvement efforts are needed in order to ensure all infants receive a timely diagnosis.
- Published
- 2020
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