Volume 29, Issue 11 (1-2023)
RJMS 2023, 29(11): 0-0 |
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Research code: 1396-1311
Ethics code: IR.IUMS.REC.1396.3248
Clinical trials code: 1396-1311
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tayefi B, شیخ طاهری ع, ghalichi L, pornik O, zarafshan H, hakim shooshtari M et al . Implementation of Autism Spectrum Disorders Registry in Tehran, Iran: rationale and study protocol. RJMS 2023; 29 (11)
URL: http://rjms.iums.ac.ir/article-1-7027-en.html
URL: http://rjms.iums.ac.ir/article-1-7027-en.html
Batool Tayefi 
, عباس شیخ طاهری , Leila Ghalichi , Omid Pornik , Hadi Zarafshan , Mitra Hakim shooshtari * , Roya Esmailzade
, عباس شیخ طاهری , Leila Ghalichi , Omid Pornik , Hadi Zarafshan , Mitra Hakim shooshtari * , Roya Esmailzade
Iran University of Medical Sciences , mitra.hakim@gmail.com
Abstract: (166 Views)
Introduction: Autism Spectrum Disorder (ASD) is a neurological developmental disorder characterized by impaired social interactions, stereotypic movements and repetitive and limited behaviors and interests. Given the increasing statistics of autism in children in the world and in Iran, the extent of problems and burdens that this disorder creates for the child, family and society, it is a necessity to identify the causes and factors related to ASD.
Moreover, data on this disorder are limited nationally and geographical differences are rarely assessed. To conduct great research on autism spectrum disorders requires a large number of samples to identify the epidemiological trend of the disorder. Registrations are one of the efficient methods that can provide this data in a long time and on a large scale.
Methods: In this study, the aim was to present a protocol to design and launch a registry for patients with autism spectrum disorders in Tehran for clinical and research purposes. The entered population in this system includes individuals (including children over 6 months and adults) with previous diagnosis or new diagnosis referred to the certain centers (Child Psychiatric Clinic of Tehran Psychiatric Institute, Ali Asghar Children's Hospital, Razi Hospital and Roozbeh Hospital) and also, physicians' offices who are members of the program's strategic committee. Patients are admitted to the program if the diagnosis of ASD is confirmed by a pediatrician, child neurologist, psychiatrist, neurologist, psychiatrist, neurologist, child psychologist according to the DSM-5 diagnostic criteria.
Then personal and demographics information and clinical and laboratory findings will be recorded by data entry experts in the system. Patients will be followed up by telephone or through coming back of the patients to the certain centers. Data analysis is done in accordance with the objectives of the registration program and is performed based on conventional statistical methods. Also, an annual report of the profiles of registered patients is sent to the beneficiaries of the program at the end of each year, including the Vice Chancellor for Research of the participating universities, the Ministry of Health, and related associations and groups.
Conclusion: Establishing registry systems, especially chronic diseases seems to be a need for work so that health policy makers can make the right policies and plans to improve the level of health. One of the most important features of registries is the enrolling of patients in the time period and the possibility of increasing the collection of patients in the country. Due to the relatively high prevalence large number of causes and increasing high financial burden of autism spectrum disorders that it imposes on society, it is a suitable c case to evaluate prevalence, environmental and genetic factors through recording all clinical and epidemiological information.
Moreover, data on this disorder are limited nationally and geographical differences are rarely assessed. To conduct great research on autism spectrum disorders requires a large number of samples to identify the epidemiological trend of the disorder. Registrations are one of the efficient methods that can provide this data in a long time and on a large scale.
Methods: In this study, the aim was to present a protocol to design and launch a registry for patients with autism spectrum disorders in Tehran for clinical and research purposes. The entered population in this system includes individuals (including children over 6 months and adults) with previous diagnosis or new diagnosis referred to the certain centers (Child Psychiatric Clinic of Tehran Psychiatric Institute, Ali Asghar Children's Hospital, Razi Hospital and Roozbeh Hospital) and also, physicians' offices who are members of the program's strategic committee. Patients are admitted to the program if the diagnosis of ASD is confirmed by a pediatrician, child neurologist, psychiatrist, neurologist, psychiatrist, neurologist, child psychologist according to the DSM-5 diagnostic criteria.
Then personal and demographics information and clinical and laboratory findings will be recorded by data entry experts in the system. Patients will be followed up by telephone or through coming back of the patients to the certain centers. Data analysis is done in accordance with the objectives of the registration program and is performed based on conventional statistical methods. Also, an annual report of the profiles of registered patients is sent to the beneficiaries of the program at the end of each year, including the Vice Chancellor for Research of the participating universities, the Ministry of Health, and related associations and groups.
Conclusion: Establishing registry systems, especially chronic diseases seems to be a need for work so that health policy makers can make the right policies and plans to improve the level of health. One of the most important features of registries is the enrolling of patients in the time period and the possibility of increasing the collection of patients in the country. Due to the relatively high prevalence large number of causes and increasing high financial burden of autism spectrum disorders that it imposes on society, it is a suitable c case to evaluate prevalence, environmental and genetic factors through recording all clinical and epidemiological information.
Type of Study: Research |
Subject:
Psychiatry
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