scholarly journals Long-term follow-up after diagnosis resulting from newborn screening: Statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children

2008 ◽  
Vol 10 (4) ◽  
pp. 259-261 ◽  
Author(s):  
Alex R Kemper ◽  
Coleen A Boyle ◽  
Javier Aceves ◽  
Denise Dougherty ◽  
James Figge ◽  
...  
Keyword(s):  
Newborn Screening ◽  
Advisory Committee ◽  
Human Services ◽  
Genetic Diseases ◽  
Health And Human Services ◽  
The Us ◽  
Long Term Follow Up

What questions should newborn screening long-term follow-up be able to answer? A statement of the US Secretary for Health and Human Servicesʼ Advisory Committee on Heritable Disorders in Newborns and Children

2011 ◽  
Vol 13 (10) ◽  
pp. 861-865 ◽  
Author(s):  
Cynthia F. Hinton ◽  
Lisa Feuchtbaum ◽  
Christopher A. Kus ◽  
Alex R. Kemper ◽  
Susan A. Berry ◽  
...  
Keyword(s):  
Newborn Screening ◽  
Advisory Committee ◽  
The Us ◽  
Long Term Follow Up

Long-term follow-up of newborn screening patients

2010 ◽  
Vol 12 ◽  
pp. S267-S268 ◽  
Author(s):  
Susan A. Berry ◽  
Michele A. Lloyd-Puryear ◽  
Michael S. Watson
Keyword(s):  
Newborn Screening ◽  
Long Term Follow Up

scholarly journals Long-term follow-up to ensure quality care of individuals diagnosed with newborn screening conditions: Early experience in New England

2010 ◽  
Vol 12 ◽  
pp. S220-S227 ◽  
Author(s):  
Inderneel Sahai ◽  
Roger B. Eaton ◽  
Jaime E. Hale ◽  
Eleanor A. Mulcahy ◽  
Anne Marie Comeau
Keyword(s):  
Newborn Screening ◽  
New England ◽  
Quality Care ◽  
Early Experience ◽  
Long Term Follow Up

Outcomes of 33 patients from the wars in Iraq and Afghanistan undergoing bilateral or bicompartmental craniectomy

2011 ◽  
Vol 115 (1) ◽  
pp. 124-129 ◽  
Author(s):  
Robert D. Ecker ◽  
Lisa P. Mulligan ◽  
Michael Dirks ◽  
Randy S. Bell ◽  
Meryl A. Severson ◽  
...  
Keyword(s):  
Medical Center ◽  
Systemic Infection ◽  
Categorical Variables ◽  
Cerebrovascular Injury ◽  
The Us ◽  
Long Term Follow Up ◽  
Initial Injury ◽  
Gcs Score

Object There are no published long-term data for patients with penetrating head injury treated with bilateral supratentorial craniectomy, or supra- and infratentorial craniectomy. The authors report their experience with 33 patients treated with bilateral or bicompartmental craniectomy from the ongoing conflicts in Iraq and Afghanistan. Methods An exploratory analysis of Glasgow Outcome Scale (GOS) scores at 6 months in 33 patients was performed. Follow-up lasting a median of more than 2 years was performed in 30 (91%) of these patients. The association of GOS score with categorical variables was explored using the Wilcoxon rank-sum test or Kruskal-Wallis analysis of variance. The Spearman correlation coefficient was used for ordinal/continuous data. To provide a clinically meaningful format to present GOS scores with categorical variables, patients with GOS scores of 1–3 were categorized as having a poor outcome and those with scores of 4 and 5 as having a good outcome. This analysis does not include the patients who died in theater or in Germany who underwent bilateral decompressive craniectomy because those figures have not been released due to security concerns. Results All patients were men with a median age of 24 years (range 19–46 years) and a median initial Glasgow Coma Scale (GCS) score of 5 (range 3–14). At 6 months, 9 characteristics were statistically significant: focus of the initial injury, systemic infection, initial GCS score, initial GCS score excluding patients with a GCS score of 3, GCS score on arrival to the US, GCS score on dismissal from the medical center, Injury Severity Score, and patients with cerebrovascular injury. Six factors were significant at long-term follow-up: focus of initial injury, systemic infection, initial GCS score excluding patients with a GCS score of 3, GCS score on arrival to the US, and GCS score on dismissal from the medical center. At long-term follow-up, 7 (23%) of 30 patients had died, 5 (17%) of 30 had a GOS score of 2 or 3, and 18 (60%) of 30 had a GOS score of 4 or 5. Conclusions In this selected group of patients who underwent bilateral or bicompartmental craniectomy, 60% are independent at long-term follow-up. Patients with bifrontal injury fared best. Systemic infection and cerebrovascular injury corresponded with a worse outcome.

Long-term follow-up of children with confirmed newborn screening disorders using record linkage

2011 ◽  
Vol 13 (10) ◽  
pp. 881-886 ◽  
Author(s):  
Ying Wang ◽  
Michele Caggana ◽  
Marilyn Sango-Jordan ◽  
Mingzeng Sun ◽  
Charlotte M. Druschel
Keyword(s):  
Newborn Screening ◽  
Record Linkage ◽  
Long Term Follow Up

scholarly journals Lessons Learned from Pompe Disease Newborn Screening and Follow-up

2020 ◽  
Vol 6 (1) ◽  
pp. 11
Author(s):  
Tracy L. Klug ◽  
Lori B. Swartz ◽  
Jon Washburn ◽  
Candice Brannen ◽  
Jami L. Kiesling
Keyword(s):  
Newborn Screening ◽  
Pompe Disease ◽  
Human Services ◽  
Lessons Learned ◽  
Lysosomal Storage ◽  
Health And Human Services ◽  
Disease Phenotypes ◽  
Department Of Health ◽  
The World

In 2015, Pompe disease became the first lysosomal storage disorder to be recommended for universal newborn screening by the Secretary of the U.S. Department of Health and Human Services. Newborn screening for Pompe has been implemented in 20 states and several countries across the world. The rates of later-onset disease phenotypes for Pompe and pseudodeficiency alleles are higher than initially anticipated, and these factors must be considered during Pompe disease newborn screening. This report presents an overview of six years of data from the Missouri State Public Health Laboratory for Pompe disease newborn screening and follow-up.

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