لیلا قالیچی

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. The purpose of this study is to describe the steps of designing and launching an autism registration system in Tehran, which can be a prelude to creating a system at the national level.

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. Initially, stakeholders in the field of autism spectrum disorders from different and related specialties were identified from partner universities of medical sciences in Tehran (Iran, Tehran, Welfare Sciences) and various centers accepting autism spectrum patients and the Strategic Committee for Autism Registration as a subset of the Vice Chancellor for Research was established in 1398 in Iran University of Medical Sciences. The Strategic Committee is responsible for developing guidelines and executive protocols consisting of experts in the fields of general psychology, child psychology, social medicine, epidemiology, information technology, health informatics and health information management, as well as the executive committee and executive groups for follow-up and conducting decisions of Strategic Committee was considered. Data Management and Information Technology (IT) Department was  Responsible for Software Design; Data collection and quality control group was responsible for data collection, quality control, feedback and data correction; The epidemiology and data analysis team was also responsible for designing and conducting the data analysis program.The population entered in this system includes people (including children over 6 months and adults) with previous diagnosis or new diagnosis of the referral centers. A child is considered to have diagnostic criteria for autism spectrum disorders according to the DSM 5 Diagnostic Guide if he or she has serious impairments in communication and social interactions as well as a limited and repetitive pattern of behavior, interests, and activities. Patients enrolled in the program have been diagnosed with ASD by a pediatrician, child psychiatrist, pediatric neurologist, psychiatrist, or neurologist.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 are covered now. Based on the objectives of the Strategic Committee and literature review for the design of registration systems, the following data collection was considered: Personal and socio-demographic characteristics (such as name, age, gender, ethnicity, parents' relatives, place of birth and residence, birth rank, education) Clinical information (such as history of developmental delay, name of the disorder, presence of seizures, presence of mental retardation and other psychiatric diagnoses, personal and family history of the disorder) Laboratory and imaging

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.In order to validate and evaluate the feasibility and ease of implementation of the data collection form, this form was piloted in several centers and then based on the results of experimental implementation, the questions were reviewed and finalized. After compiling the final version of the data collection form, the software registry system was designed for the web. In order to maintain data security, a separate access and a specific access level for each user is determined and hosted on the servers of Iran University of Medical Sciences. Data analysis is done in accordance with the objectives of the registry and is performed based on the required statistical methods. Also, an annual report on the profile of registered patients of the registry 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.In 2014, the Deputy Minister of Research at the Ministry of Health and Medical Education (MOHME) of Iran decided to establish registration systems for various diseases and health consequences (4). In this regard, the launch of a clinical-research registry in autism in Tehran was considered. Setting up an autism spectrum disorder information registry in Tehran as a preliminary study for its establishment at the national level can help to integrate research activities and create a research network and prevent incoherence, rework and waste of time and energy in related research activities in the country. In addition to the direct use of data for research activities, such systems can also be used to identify patients eligible for clinical trials. In addition, it is possible to study the natural course of this disorder, track individuals and help increase the country's indigenous knowledge based on local and regional information. In addition, launching a program to record the autism spectrum disorders will help policymakers and health planners in the country to decide and plan for it.In addition, is not possible for policy makers to plan in an integrated, comprehensive, accurate and up-to-date way without having access to such online information systems. In the long run, this study aims to record all ASD information across the country in this system to eliminate the huge challenges of patients, physicians and health decision makers and also Smoothing the way for research further.

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

In Iran’s health system, with integration of medical education and ministry of health, medical universities have a variety of responsibilities apart from delivering medical education to university students. Medical universities are playing an essential role in management of the health system. They are in charge of providing the necessary prevention and treatment services in provincial levels, as well as management and oversight of the health services needed by the population. Meanwhile, medical universities are expected to maintain and improve population health through scientific and innovative methods. Although the indicators highlight the success of these universities in many of their tasks, sometimes they fail to fulfil the expected targets. Identifying problems and challenges that hinder universities’ performance and supporting them with innovative problem solving methods can help managers in achieving university goals. Therefore, recognizing and analyzing the university challenges are essential steps that should be taken for the strengthening the university system and empower them to respond more successfully to the existing and future needs and to assure that the university continues its pathway toward growth and development and keeps up the track of achieving its goals.

This study is an applied research project, which has been designed to identify and categorize the challenges that affect the performance of different sectors of Iran University of Medical Sciences. The participants of this qualitative study were experts, managers, directors and officers of different sectors of the university, including faculties, deputies, offices, hospitals and health centers. In the first step, an open-ended questionnaire was developed and evaluated to extract challenges and problems faced by different units in the university. Then, this open-ended questionnaire was distributed and the challenges and problems of different academic and non-academic units of the university were collected through questioning the managers and staff of all units and subunits about the most important challenges they face. For each challenge they mentioned, title of the challenge, description, and the rational of their importance and priority was provided. The process continued until no new themes emerged. At the end of this step, a list of existing challenges and problems along with their description and rational for selection were available. In the next step, the collected concepts were analyzed in order to investigate the limiting role of these challenges on the performance of different units in the university. After organizing the answers and reviewing the suggested items, similar and overlapping items were merged or removed.  Also, challenges that targeted a limited number of units or those targeting people (instead of problems or processes) were removed. In the following step, reviewing and coding was performed and themes were extracted by two independent researchers. Finally, the themes were summarized based on the opinions of different experts and by achieving consensus. At the end of this step, affecting factors were identified, categorized and presented. In the last step, three rounds of focus group discussions were held to evaluate the accuracy of the obtained data. In all steps of the study, in order to benefit from the views of a wide range of experts and managers and officers with different experiences, purposive sampling was performed. The data collection continued until data reached saturation. Content analysis was undertaken to provide a complete understanding of the collected data. For maintaining the ethical considerations, the names of the study units and any reference to specific people and occasions were removed from the reports and texts.

we achieved a response rate of 90 percent through multiple reminders and follow ups we sent to unit managers. Based on the responses from units, 215 problems were identified from 38 participating units. The identified problems were categorized into three main themes. Most of the mentioned problems could be categorized under the general theme of lack of evidence-based management. In fact, issues related to lack of evidence-based management was mentioned by almost every participant. This theme includes issues such as Lack of effective monitoring and evaluation systems, and poor frameworks and process flows for applying evaluation results; excessive focus on quantitative approaches for evaluating performance of teams and individuals, and lack of efficient and fair rewarding and punishing systems. The second emerged theme was inefficient bureaucracy, where issues such as legal, managerial, structural and process problems are addresses. Organizational culture was the third extracted theme and defective staff education, communication and motivation, poor workforce performance and attitudes to organization; and insufficient professional commitment were among the most frequently indicated problems. Lack of meritocracy was an issue mentioned across all three themes by participants and was considered as an important determining topic linking all three themes. This topic highlighted lack of predefined approaches for selecting staff at different levels and unclear process of succession in different organizational levels and units.

According to the university workforce, the main problems and challenges that hinder university performance are rooted in an environment of interrelated factors which can be categorized mainly in absence of evidence-based management, inefficient bureaucratic structure, undefined and underdeveloped decision-making process at different levels of the organization, and some aspects of the organizational culture that may adversely affect the processes of the organization. Based on these results, it can be concluded that the university’s existing performance management system, is generally hindering the evidence based management, which in turn, results in shaping of an overall ineffective approach to the decision making processes and a rather static organizational status. Moreover, such cultural environment can consequently cause a attitude of resistance versus different efforts toward evidence based management. Finally, it can be concluded that if a sustainable and effective change is intended to occur in the management of the university, the probable concurrent effects of the designed interventions an all three hindering factors should be considered with high caution. This consideration is especially important because it is believed that implementing an evidence based decision making system in an organization requires detailed evaluation of organizational culture and characteristics; and failing to provide these information properly can result in a serious obstacles in success of the interventions.

To determine the incidence, severity and risk factors for retinopathy of prematurity (ROP) in premature infants with late retinal examination at Farabi Hospital from 2001 to 2006.

In a cross-sectional study, hospital records of premature infants who were examined later than 9 weeks after birth were reviewed for possible risk factors of ROP including gender, singleton or multiple gestations, gestational age (GA), birth weight (BW), oxygen therapy, blood transfusion, photo-therapy, and respiratory distress syndrome (RDS), as well as the age at initial examination.

From 693 infants referred for ROP screening, 191 (27.6%) had late retinal examination at mean age of 144.8±158.4 (range 64-1460) days. Of these 191 infants, 75 (39.3%) had different stages of ROP, 58 (30.4%) had stage 4 or 5 disease and 27 (14.1%) had stage 5 ROP in both eyes which were untreatable. GA and BW were associated with development of ROP (P<0.001).

The high prevalence of premature infants with late retinal examination and high incidence of severe ROP necessitates prompt intervention to optimize referral and early screening of premature infants.