Literature DB >> 33219631

An international telemedicine program for diagnosis of genetic disorders: Partnership of pediatrician and geneticist.

Rafael Mena1,2, Esperanza Mendoza1, Maria Gomez Peña3, C Alexander Valencia4, Ehsan Ullah5, Robert B Hufnagel5, Carlos E Prada4,6.   

Abstract

There is a shortage of genetics providers worldwide and access is limited to large academic centers. Telemedicine programs can facilitate access to genetic services to patients living in remote locations. The goal of this study was to improve access to genetic services in the Dominican Republic by creating a partnership model between a pediatrician and geneticist. This approach has been used within the United States but not in the setting of two different countries, healthcare system, and cultures. Patients were referred to the Centro de Obstetricia y Ginecologia program if a syndromic or genetic etiology was suspected by their local provider. Pediatrician first evaluated all patients prior to telemedicine appointment to review family and medical history. All genetic visits were scheduled within 2 weeks of referral in collaboration with telehealth program at Cincinnati Children's Hospital Medical Center. A total of 66 individuals were evaluated during a period of 5 years. Fifty-seven individuals underwent genetic studies, and a molecular diagnosis was made in 39 individuals. Exome sequencing was the most common first line test when differential diagnosis was broad (n = 40). The most common inheritance was autosomal recessive in 15 individuals, followed by 13 individuals with autosomal dominant disorders, 7 individuals X-linked disorders, and 4 individuals with chromosomal abnormalities. This study provides data to support utility of geneticist and pediatrician partnership to provide outreach telemedicine diagnostics and management services for rare diseases in an international setting.
© 2020 Wiley Periodicals LLC.

Entities:  

Keywords:  exome sequencing; pediatrics; rare diseases; telegenetics; telehealth; telemedicine

Mesh:

Year:  2020        PMID: 33219631      PMCID: PMC8830380          DOI: 10.1002/ajmg.c.31859

Source DB:  PubMed          Journal:  Am J Med Genet C Semin Med Genet        ISSN: 1552-4868            Impact factor:   3.359


  17 in total

1.  Telegenetics use in presymptomatic genetic counselling: patient evaluations on satisfaction and quality of care.

Authors:  Ellen Otten; Erwin Birnie; Adelita V Ranchor; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2015-07-15       Impact factor: 4.246

2.  Telegenetic medicine: improved access to services in an underserved area.

Authors:  H J Stalker; R Wilson; H McCune; J Gonzalez; M Moffett; R T Zori
Journal:  J Telemed Telecare       Date:  2006       Impact factor: 6.184

3.  The molecular autopsy: an indispensable step following sudden cardiac death in the young?

Authors:  Nicole J Boczek; David J Tester; Michael J Ackerman
Journal:  Herzschrittmacherther Elektrophysiol       Date:  2012-09-20

Review 4.  Telemedicine in epilepsy: How can we improve care, teaching, and awareness?

Authors:  Najib Kissani; Yilédoma Thierry Modeste Lengané; Victor Patterson; Boulenouar Mesraoua; Eliashiv Dawn; Cigdem Ozkara; Graeme Shears; Harmiena Riphagen; Ali A Asadi-Pooya; Alicia Bogacz; Ismael El Aarrouni; Pradeep Pankajakshan Nair
Journal:  Epilepsy Behav       Date:  2020-01-06       Impact factor: 2.937

5.  Phenotypic and biochemical analysis of an international cohort of individuals with variants in NAA10 and NAA15.

Authors:  Hanyin Cheng; Leah Gottlieb; Elaine Marchi; Robert Kleyner; Puja Bhardwaj; Alan F Rope; Sarah Rosenheck; Sébastien Moutton; Christophe Philippe; Wafaa Eyaid; Fowzan S Alkuraya; Janet Toribio; Rafael Mena; Carlos E Prada; Holly Stessman; Raphael Bernier; Marieke Wermuth; Birgit Kauffmann; Bettina Blaumeiser; R Frank Kooy; Diana Baralle; Grazia M S Mancini; Simon J Conway; Fan Xia; Zhao Chen; Linyan Meng; Ljubisa Mihajlovic; Ronen Marmorstein; Gholson J Lyon
Journal:  Hum Mol Genet       Date:  2019-09-01       Impact factor: 6.150

6.  Exome sequencing-based molecular autopsy of formalin-fixed paraffin-embedded tissue after sudden death.

Authors:  Richard D Bagnall; Jodie Ingles; Laura Yeates; Samuel F Berkovic; Christopher Semsarian
Journal:  Genet Med       Date:  2017-03-23       Impact factor: 8.822

7.  The Effect of the COVID-19 Pandemic on Physicians' Use and Perception of Telehealth: The Case of Lebanon.

Authors:  Samar Helou; Elie El Helou; Victoria Abou-Khalil; Jad Wakim; Jeanine El Helou; Alain Daher; Charline El Hachem
Journal:  Int J Environ Res Public Health       Date:  2020-07-06       Impact factor: 3.390

8.  A genetic counseling needs assessment of Mexico.

Authors:  Daiana Bucio; Kelly E Ormond; Daisy Hernandez; Carlos D Bustamante; Arturo Lopez Pineda
Journal:  Mol Genet Genomic Med       Date:  2019-04-01       Impact factor: 2.183

Review 9.  Telegenetics: a systematic review of telemedicine in genetics services.

Authors:  Jennifer S Hilgart; Julie A Hayward; Bernadette Coles; Rachel Iredale
Journal:  Genet Med       Date:  2012-09       Impact factor: 8.822

10.  Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders.

Authors:  Michael Smith; Elizabeth Alexander; Ruta Marcinkute; Dorica Dan; Myfanwy Rawson; Siddharth Banka; Jason Gavin; Hany Mina; Con Hennessy; Florence Riccardi; Francesca Clementina Radio; Marketa Havlovicova; Matteo Cassina; Adela Chirita Emandi; Melanie Fradin; Lianne Gompertz; Ann Nordgren; Rasa Traberg; Massimiliano Rossi; Aurelién Trimouille; Rasika Sowmyalakshmi; Bruno Dallapiccola; Alessandra Renieri; Laurence Faivre; Bronwyn Kerr; Alain Verloes; Jill Clayton-Smith; Sofia Douzgou
Journal:  Orphanet J Rare Dis       Date:  2020-04-25       Impact factor: 4.123

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  1 in total

1.  Genetic care in geographically isolated small island communities: 8 years of experience in the Dutch Caribbean.

Authors:  Eline A Verberne; Jonne M Westermann; Tamar I de Vries; Ginette M Ecury-Goossen; Shirley M Lo-A-Njoe; Meindert E Manshande; Sonja Faries; Hans D Veenhuis; Patricia Philippi; Farah A Falix; Irsa Rosina-Angelista; Maria Ponson-Wever; Louise Rafael-Croes; Patricia Thorsen; Eric Arends; Maartje de Vroomen; Sietse Q Nagelkerke; Martijn Tilanus; Lars T van der Veken; Karin Huijsdens-van Amsterdam; Anne-Marie van der Kevie-Kersemaekers; Mariëlle Alders; Marcel M A M Mannens; Mieke M van Haelst
Journal:  Am J Med Genet A       Date:  2022-03-07       Impact factor: 2.578

  1 in total

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