Literature DB >> 26336202

Remote Assessment of Cognitive Function in Juvenile Neuronal Ceroid Lipofuscinosis (Batten disease): A Pilot Study of Feasibility and Reliability.

Shayne N Ragbeer1, Erika F Augustine2, Jonathan W Mink2, Alyssa R Thatcher2, Amy E Vierhile2, Heather R Adams3.   

Abstract

Remote technology provides an opportunity to extend the reach of clinical care and research for pediatric rare disease. This pilot study evaluated the feasibility and reliability of neuropsychological evaluation, using remote audiovisual technology, in the assessment of children with juvenile Batten disease. Three children with Batten disease and 1 healthy sibling completed a standardized cognitive assessment. Results indicated high agreement between an in-person and a remote evaluator when comparing the subjects' cognitive test scores. This initial test of remote cognitive assessment suggests it is feasible and reliable in children with pediatric neurodegenerative disease, for whom disease burden may limit travel and access to expert care and/or clinical trials.
© The Author(s) 2015.

Entities:  

Keywords:  Batten disease; CLN3; JNCL; neurodegenerative disease; telemedicine

Mesh：

Substances：

Year:  2015        PMID： 26336202      PMCID： PMC4749443          DOI： 10.1177/0883073815600863

Source DB:  PubMed          Journal:  J Child Neurol        ISSN： 0883-0738            Impact factor:   1.987


  26 in total

1.  Quantitative telemedicine ratings in Batten disease: implications for rare disease research.

Authors:  J Cialone; E F Augustine; N Newhouse; A Vierhile; F J Marshall; J W Mink
Journal:  Neurology       Date:  2011-10-19       Impact factor: 9.910

2.  New nomenclature and classification scheme for the neuronal ceroid lipofuscinoses.

Authors:  Ruth E Williams; Sara E Mole
Journal:  Neurology       Date:  2012-07-10       Impact factor: 9.910

3.  Internet-based telehealth assessment of language using the CELF-4.

Authors:  Monique C Waite; Deborah G Theodoros; Trevor G Russell; Louise M Cahill
Journal:  Lang Speech Hear Serv Sch       Date:  2010-04-26       Impact factor: 2.983

Review 4.  Novel methods and technologies for 21st-century clinical trials: a review.

Authors:  E Ray Dorsey; Charles Venuto; Vinayak Venkataraman; Denzil A Harris; Karl Kieburtz
Journal:  JAMA Neurol       Date:  2015-05       Impact factor: 18.302

5.  Standardized assessment of behavior and adaptive living skills in juvenile neuronal ceroid lipofuscinosis.

Authors:  Heather Adams; Elisabeth A de Blieck; Jonathan W Mink; Frederick J Marshall; Jennifer Kwon; Leon Dure; Paul G Rothberg; Denia Ramirez-Montealegre; David A Pearce
Journal:  Dev Med Child Neurol       Date:  2006-04       Impact factor: 5.449

6.  Identifying undiagnosed dementia in residential care veterans: comparing telemedicine to in-person clinical examination.

Authors:  Molly M Shores; Peggy Ryan-Dykes; Rhonda M Williams; Bless Mamerto; Tatiana Sadak; Marcella Pascualy; Bradford L Felker; Mercedes Zweigle; Paul Nichol; Elaine R Peskind
Journal:  Int J Geriatr Psychiatry       Date:  2004-02       Impact factor: 3.485

7.  Can patients with dementia be assessed at a distance? The use of Telehealth and standardised assessments.

Authors:  P K Loh; P Ramesh; S Maher; J Saligari; L Flicker; P Goldswain
Journal:  Intern Med J       Date:  2004-05       Impact factor: 2.048

8.  Telemedicine and the mini-mental state examination: assessment from a distance.

Authors:  Elizabeth L Ciemins; Barbara Holloway; Patricia Jay Coon; Thelma McClosky-Armstrong; Sung-Joon Min
Journal:  Telemed J E Health       Date:  2009-06       Impact factor: 3.536

Review 9.  CLN3, the protein associated with batten disease: structure, function and localization.

Authors:  Seasson N Phillips; Jared W Benedict; Jill M Weimer; David A Pearce
Journal:  J Neurosci Res       Date:  2005-03-01       Impact factor: 4.433

Review 10.  Telephone-based screening tools for mild cognitive impairment and dementia in aging studies: a review of validated instruments.

Authors:  Teresa C Castanho; Liliana Amorim; Joseph Zihl; Joana A Palha; Nuno Sousa; Nadine C Santos
Journal:  Front Aging Neurosci       Date:  2014-02-25       Impact factor: 5.750
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  5 in total

Review 1.  Teleneurology and mobile technologies: the future of neurological care.

Authors:  E Ray Dorsey; Alistair M Glidden; Melissa R Holloway; Gretchen L Birbeck; Lee H Schwamm
Journal:  Nat Rev Neurol       Date:  2018-04-06       Impact factor: 42.937

Review 2.  The Promise of Telemedicine for Movement Disorders: an Interdisciplinary Approach.

Authors:  H Ben-Pazi; P Browne; P Chan; E Cubo; M Guttman; A Hassan; J Hatcher-Martin; Z Mari; E Moukheiber; N U Okubadejo; A Shalash
Journal:  Curr Neurol Neurosci Rep       Date:  2018-04-13       Impact factor: 5.081

3.  Executive Functions and Rapid Automatized Naming: A New Tele-Rehabilitation Approach in Children with Language and Learning Disorders.

Authors:  Agnese Capodieci; Marco Romano; Emanuela Castro; Maria Chiara Di Lieto; Silvia Bonetti; Silvia Spoglianti; Chiara Pecini
Journal:  Children (Basel)       Date:  2022-06-02

4.  Neurocognitive clinical outcome assessments for inborn errors of metabolism and other rare conditions.

Authors:  Elsa Shapiro; Jessica Bernstein; Heather R Adams; Ann J Barbier; Teresa Buracchio; Peter Como; Kathleen A Delaney; Florian Eichler; Jonathan C Goldsmith; Melissa Hogan; Sarrit Kovacs; Jonathan W Mink; Joanne Odenkirchen; Melissa A Parisi; Alison Skrinar; Susan E Waisbren; Andrew E Mulberg
Journal:  Mol Genet Metab       Date:  2016-04-14       Impact factor: 4.797

5.  Remote Assessment of Cognition in Kids and Adolescents with Daytime Sleepiness: A pilot study of feasibility and reliability.

Authors:  Jennifer Worhach; Madeline Boduch; Bo Zhang; Kiran Maski
Journal:  medRxiv       Date:  2021-03-26
  5 in total

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