Randomized Clinical Trial of First-Line Genome Sequencing in Pediatric White Matter Disorders.


Journal

Annals of neurology
ISSN: 1531-8249
Titre abrégé: Ann Neurol
Pays: United States
ID NLM: 7707449

Informations de publication

Date de publication:
08 2020
Historique:
received: 30 09 2019
revised: 19 04 2020
accepted: 20 04 2020
pubmed: 29 4 2020
medline: 15 12 2020
entrez: 29 4 2020
Statut: ppublish

Résumé

Genome sequencing (GS) is promising for unsolved leukodystrophies, but its efficacy has not been prospectively studied. A prospective time-delayed crossover design trial of GS to assess the efficacy of GS as a first-line diagnostic tool for genetic white matter disorders took place between December 1, 2015 and September 27, 2017. Patients were randomized to receive GS immediately with concurrent standard of care (SoC) testing, or to receive SoC testing for 4 months followed by GS. Thirty-four individuals were assessed at interim review. The genetic origin of 2 patient's leukoencephalopathy was resolved before randomization. Nine patients were stratified to the immediate intervention group and 23 patients to the delayed-GS arm. The efficacy of GS was significant relative to SoC in the immediate (5/9 [56%] vs 0/9 [0%]; Wild-Seber, p < 0.005) and delayed (control) arms (14/23 [61%] vs 5/23 [22%]; Wild-Seber, p < 0.005). The time to diagnosis was significantly shorter in the immediate-GS group (log-rank test, p = 0.04). The overall diagnostic efficacy of combined GS and SoC approaches was 26 of 34 (76.5%, 95% confidence interval = 58.8-89.3%) in <4 months, greater than historical norms of <50% over 5 years. Owing to loss of clinical equipoise, the trial design was altered to a single-arm observational study. In this study, first-line GS provided earlier and greater diagnostic efficacy in white matter disorders. We provide an evidence-based diagnostic testing algorithm to enable appropriate clinical GS utilization in this population. ANN NEUROL 2020;88:264-273.

Identifiants

pubmed: 32342562
doi: 10.1002/ana.25757
pmc: PMC8061316
mid: NIHMS1685698
doi:

Banques de données

ClinicalTrials.gov
['NCT02699190']

Types de publication

Journal Article Randomized Controlled Trial Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

264-273

Subventions

Organisme : NINDS NIH HHS
ID : K23 NS087151
Pays : United States
Organisme : NINDS NIH HHS
ID : U54 NS115052
Pays : United States
Organisme : CIHR
Pays : Canada

Informations de copyright

© 2020 American Neurological Association.

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Auteurs

Adeline Vanderver (A)

Division of Neurology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Geneviève Bernard (G)

Departments of Neurology and Neurosurgery, Pediatrics, and Human Genetics, McGill University, Montreal, Quebec, Canada.
Department of Specialized Medicine, Division of Medical Genetics, Montreal Children's Hospital and McGill University Health Centre, Montreal, Quebec, Canada.
Child Health and Human Development Program, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

Guy Helman (G)

Institute for Molecular Bioscience, University of Queensland, Brisbane, Queensland, Australia.
Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.

Omar Sherbini (O)

Division of Neurology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Ryan Boeck (R)

Child Neurology Consultants of Austin, Austin, Texas, USA.
University of Texas at Austin Dell Medical School, Austin, Texas, USA.

Jeffrey Cohn (J)

Family Medicine, Broadlands Family Practice at Ashburn, Ashburn, Virginia, USA.

Abigail Collins (A)

Department of Neurology, Anschutz Medical Campus, University of Colorado School of Medicine, Aurora, Colorado, USA.

Scott Demarest (S)

Department of Neurology, Anschutz Medical Campus, University of Colorado School of Medicine, Aurora, Colorado, USA.

Katherine Dobbins (K)

Walter Reed National Military Medical Center, Bethesda, Maryland, USA.

Lisa Emrick (L)

Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas, USA.

Jamie L Fraser (JL)

Division of Genetics and Metabolism, Rare Disease Institute, Children's National Hospital, Washington, District of Columbia, USA.
George Washington University, Washington, District of Columbia, USA.

Diane Masser-Frye (D)

Rady Children's Hospital, San Diego, California, USA.

Jean Hayward (J)

Department of Pediatrics, Kaiser Oakland, Oakland, California, USA.

Swati Karmarkar (S)

Department of Neurology, Le Bonheur Children's Hospital, Memphis, Tennessee, USA.
Department of Pediatrics, University of Tennessee Health Science Center, Memphis, Tennessee, USA.

Stephanie Keller (S)

Division of Neurology, Department of Pediatrics, Emory University, Atlanta, Georgia, USA.

Samuel Mirrop (S)

Pediatric Associates of Austin, Austin, Texas, USA.

Wendy Mitchell (W)

Division of Neurology, Children's Hospital of Los Angeles, Los Angeles, California, USA.
Keck School of Medicine, University of Southern California, Los Angeles, California, USA.

Sheel Pathak (S)

Clinical Neurology, Washington University Clinical Associates, St Louis, Missouri, USA.
Department of Neurology, Washington University School of Medicine, St Louis, Missouri, USA.

Elliott Sherr (E)

Department of Neurology, University of California, San Francisco School of Medicine, San Francisco, California, USA.

Keith van Haren (K)

Department of Neurology, Stanford University Medical Center, Stanford, California, USA.

Erica Waters (E)

Pediatric Associates of Stockton, Stockton, California, USA.

Jenny L Wilson (JL)

Division of Pediatric Neurology, Oregon Health & Science University School of Medicine, Portland, Oregon, USA.

Leah Zhorne (L)

Stead Family Department of Pediatrics, Carver College of Medicine, University of Iowa Health Care, Iowa City, Iowa, USA.

Raphael Schiffmann (R)

Institute of Metabolic Disease, Baylor Scott & White Research Institute, Dallas, Texas, USA.

Marjo S van der Knaap (MS)

Department of Child Neurology, VU University Medical Center, Amsterdam, the Netherlands.
Department of Functional Genomics, Amsterdam Neuroscience, VU University, Amsterdam, the Netherlands.

Amy Pizzino (A)

Division of Neurology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Holly Dubbs (H)

Division of Neurology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Justine Shults (J)

Department of Biostatistics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Cas Simons (C)

Institute for Molecular Bioscience, University of Queensland, Brisbane, Queensland, Australia.
Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.

Ryan J Taft (RJ)

Illumina, San Diego, California, USA.

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Classifications MeSH