An international telemedicine program for diagnosis of genetic disorders: Partnership of pediatrician and geneticist.
Rafael MenaEsperanza MendozaMaria Gomez PeñaC Alexander ValenciaEhsan UllahRobert B HufnagelCarlos E PradaPublished in: American journal of medical genetics. Part C, Seminars in medical genetics (2020)
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.
Keyphrases
- end stage renal disease
- healthcare
- primary care
- copy number
- ejection fraction
- chronic kidney disease
- newly diagnosed
- genome wide
- mental health
- prognostic factors
- emergency department
- public health
- quality improvement
- electronic health record
- young adults
- dna methylation
- gene expression
- deep learning
- artificial intelligence
- medical students
- duchenne muscular dystrophy