Donna S Murray1, Angie Fedele2, Amy Shui3, Daniel L Coury4. 1. Autism Speaks Autism Treatment Network; Boston, Massachusetts Cincinnati Children's Hospital Medical Center, Division of Developmental and Behavioral Pediatrics, The Kelly O'Leary Center for Autism Spectrum Disorders, Cincinnati, Ohio; Autism Intervention Research Network on Physical Health (Health Resources and Services Administration); donna.murray@autismspeaks.org. 2. Autism Speaks Autism Treatment Network; Boston, Massachusetts Autism Intervention Research Network on Physical Health (Health Resources and Services Administration); 3. Autism Speaks Autism Treatment Network; Boston, Massachusetts Autism Intervention Research Network on Physical Health (Health Resources and Services Administration); Massachusetts General Hospital, Biostatistics Center, Boston, Massachusetts; 4. Autism Speaks Autism Treatment Network; Boston, Massachusetts Autism Intervention Research Network on Physical Health (Health Resources and Services Administration); Nationwide Children's Hospital, Developmental and Behavioral Pediatrics, Columbus, Ohio; and Ohio State University, College of Medicine, Columbus, Ohio.
Abstract
OBJECTIVE: Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs. Here we describe the establishment of the registry, its components, some of its findings to date, and opportunities for further use of this data. METHODS: Participants are eligible for enrollment into the ATN registry if they are between the ages of 2.0 and 17.6 years at the time of enrollment and meet criteria for ASD as determined by clinical consensus on the basis of specific diagnostic measures (Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule, Second Edition; Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition/Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition). Baseline measures include demographics, autism assessment, cognitive assessment data, behavioral data, sleep habits, quality of life, sensory data, and treatments. Several of the measures are collected at annual follow-up visits. RESULTS: More than 6800 children with ASD have been enrolled in the Autism Speaks ATN registry. Data from the registry have been reported at numerous scientific meetings and in several publications and have led to new recommendations for best practices in the management of ASD. CONCLUSIONS: A patient registry for children and adolescents with ASD has had and will continue to have a significant impact on care for this population. Investigators are encouraged to query this database to further its impact by testing novel hypotheses and conducting preliminary proof-of-concept analyses.
OBJECTIVE:Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs. Here we describe the establishment of the registry, its components, some of its findings to date, and opportunities for further use of this data. METHODS:Participants are eligible for enrollment into the ATN registry if they are between the ages of 2.0 and 17.6 years at the time of enrollment and meet criteria for ASD as determined by clinical consensus on the basis of specific diagnostic measures (Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule, Second Edition; Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition/Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition). Baseline measures include demographics, autism assessment, cognitive assessment data, behavioral data, sleep habits, quality of life, sensory data, and treatments. Several of the measures are collected at annual follow-up visits. RESULTS: More than 6800 children with ASD have been enrolled in the Autism Speaks ATN registry. Data from the registry have been reported at numerous scientific meetings and in several publications and have led to new recommendations for best practices in the management of ASD. CONCLUSIONS: A patient registry for children and adolescents with ASD has had and will continue to have a significant impact on care for this population. Investigators are encouraged to query this database to further its impact by testing novel hypotheses and conducting preliminary proof-of-concept analyses.
Authors: Donna S Murray; Julia S Anixt; Daniel L Coury; Karen A Kuhlthau; Janet Seide; Amy Kelly; Angie Fedele; Diane Eskra; Carole Lannon Journal: Pediatr Qual Saf Date: 2019-04-02
Authors: Faris M Abomelha; Hesham AlDhalaan; Mohammad Ghaziuddin; Nada A Al-Tassan; Bashayer R Al-Mubarak Journal: Genes (Basel) Date: 2022-08-28 Impact factor: 4.141