Therapies for rare diseases: therapeutic modalities, progress and challenges ahead

E Tambuyzer, B Vandendriessche, CP Austin… - Nature Reviews Drug …, 2020 - nature.com
Most rare diseases still lack approved treatments despite major advances in research
providing the tools to understand their molecular basis, as well as legislation providing …

[PDF][PDF] A genome sequencing system for universal newborn screening, diagnosis, and precision medicine for severe genetic diseases

SF Kingsmore, LD Smith, CM Kunard… - The American Journal of …, 2022 - cell.com
Newborn screening (NBS) dramatically improves outcomes in severe childhood disorders
by treatment before symptom onset. In many genetic diseases, however, outcomes remain …

Exome and genome sequencing for pediatric patients with congenital anomalies or intellectual disability: an evidence-based clinical guideline of the American …

K Manickam, MR McClain, LA Demmer, S Biswas… - Genetics in …, 2021 - nature.com
Purpose To develop an evidence-based clinical practice guideline for the use of exome and
genome sequencing (ES/GS) in the care of pediatric patients with one or more congenital …

[PDF][PDF] GA4GH: International policies and standards for data sharing across genomic research and healthcare

HL Rehm, AJH Page, L Smith, JB Adams, G Alterovitz… - Cell genomics, 2021 - cell.com
Summary The Global Alliance for Genomics and Health (GA4GH) aims to accelerate
biomedical advances by enabling the responsible sharing of clinical and genomic data …

[PDF][PDF] Project Baby Bear: Rapid precision care incorporating rWGS in 5 California children's hospitals demonstrates improved clinical outcomes and reduced costs of …

D Dimmock, S Caylor, B Waldman, W Benson… - The American Journal of …, 2021 - cell.com
Genetic disorders are a leading contributor to mortality in neonatal and pediatric intensive
care units (ICUs). Rapid whole-genome sequencing (rWGS)-based rapid precision medicine …

Meta-analysis of the diagnostic and clinical utility of genome and exome sequencing and chromosomal microarray in children with suspected genetic diseases

MM Clark, Z Stark, L Farnaes, TY Tan, SM White… - NPJ genomic …, 2018 - nature.com
Genetic diseases are leading causes of childhood mortality. Whole-genome sequencing
(WGS) and whole-exome sequencing (WES) are relatively new methods for diagnosing …

Effect of whole-genome sequencing on the clinical management of acutely ill infants with suspected genetic disease: a randomized clinical trial

ID Krantz, L Medne, JM Weatherly, KT Wild… - JAMA …, 2021 - jamanetwork.com
Importance Whole-genome sequencing (WGS) shows promise as a first-line genetic test for
acutely ill infants, but widespread adoption and implementation requires evidence of an …

The role of exome sequencing in newborn screening for inborn errors of metabolism

AN Adhikari, RC Gallagher, Y Wang, RJ Currier… - Nature medicine, 2020 - nature.com
Public health newborn screening (NBS) programs provide population-scale ascertainment
of rare, treatable conditions that require urgent intervention. Tandem mass spectrometry …

Feasibility of ultra-rapid exome sequencing in critically ill infants and children with suspected monogenic conditions in the Australian public health care system

S Lunke, S Eggers, M Wilson, C Patel, CP Barnett… - Jama, 2020 - jamanetwork.com
Importance Widespread adoption of rapid genomic testing in pediatric critical care requires
robust clinical and laboratory pathways that provide equitable and consistent service across …

An automated 13.5 hour system for scalable diagnosis and acute management guidance for genetic diseases

MJ Owen, S Lefebvre, C Hansen, CM Kunard… - Nature …, 2022 - nature.com
While many genetic diseases have effective treatments, they frequently progress rapidly to
severe morbidity or mortality if those treatments are not implemented immediately. Since …