The research landscape of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND)—a comprehensive sco** review
S Vanclooster, S Bissell, AM van Eeghen… - Journal of …, 2022 - Springer
Background Tuberous sclerosis complex (TSC)–associated neuropsychiatric disorders
(TAND) is an umbrella term for the behavioural, psychiatric, intellectual, academic …
(TAND) is an umbrella term for the behavioural, psychiatric, intellectual, academic …
[HTML][HTML] Telehealth for rare disease care, research, and education across the globe: A review of the literature by the IRDiRC telehealth task force
FH Chen, AL Hartman, MCV Letinturier… - European Journal of …, 2024 - Elsevier
Abstract The International Rare Diseases Research Consortium (IRDiRC) Telehealth (TH)
Task Force explored the use of TH for improving diagnosis, care, research, and education …
Task Force explored the use of TH for improving diagnosis, care, research, and education …
Leveraging telehealth to evaluate infants with prodromal autism spectrum disorder characteristics using the telehealth evaluation of development for infants
MR Talbott, S Dufek, G Young, SJ Rogers - Autism, 2022 - journals.sagepub.com
This study investigated the feasibility of recruiting and assessing infants with prodromal
autism characteristics in the first year of life via telehealth. Participants included 41 infants …
autism characteristics in the first year of life via telehealth. Participants included 41 infants …
Neurobehavioral dimensions of prader willi syndrome: Relationships between sleep and psychosis-risk symptoms
Background Prader Willi Syndrome (PWS) is a genetic disorder caused by the absence of
expression of the paternal copies of maternally imprinted gene (s) located at 15q11–q13 …
expression of the paternal copies of maternally imprinted gene (s) located at 15q11–q13 …
Narrative review of telemedicine applications in decentralized research
Telemedicine enables critical human communication and interaction between researchers
and participants in decentralized research studies. There is a need to better understand the …
and participants in decentralized research studies. There is a need to better understand the …
Use of communication technology to improve clinical trial participation in adolescents and young adults with cancer: consensus statement from the Children's …
V Avutu, V Monga, N Mittal, A Saha… - JCO oncology …, 2022 - ascopubs.org
Adolescents and young adults (AYAs; age 15-39 years) with cancer are under-represented
in cancer clinical trials because of patient, provider, and institutional barriers. Health care …
in cancer clinical trials because of patient, provider, and institutional barriers. Health care …
Preserved neonatal follow-up care during COVID-19: Use of neurodevelopmental evaluation via telehealth.
S Butt, J Nahman, C Cederberg… - Clinical Practice in …, 2024 - psycnet.apa.org
Objective: This retrospective study aimed to analyze the practicality of conducting
teleneurodevelopmental evaluations with a general clinical population of children under 5 …
teleneurodevelopmental evaluations with a general clinical population of children under 5 …
Telehealth training in naturalistic communication intervention for mothers of children with Angelman syndrome
Abstract Objectives Young children with Angelman syndrome have significant delays in
expressive communication. Parents of children with Angelman syndrome require training to …
expressive communication. Parents of children with Angelman syndrome require training to …
Assessment of the reliability of at-home caregiver-collected anthropometric measurements
JJ Ly, A Sosa, M Heidman, MF Dixon… - Frontiers in …, 2024 - frontiersin.org
Introduction Anthropometric measurements provide valuable information about infant growth
patterns and can help identify nutrition, growth, and developmental concerns. With the …
patterns and can help identify nutrition, growth, and developmental concerns. With the …
[PDF][PDF] The importance of refined assessment of communication and social functioning in people with intellectual disabilities: Insights from neurogenetic syndrome …
Difficulties in communication and social functioning are key diagnostic components of
intellectual disability (ID), and negatively impact the wellbeing of those with ID …
intellectual disability (ID), and negatively impact the wellbeing of those with ID …