Background and Aim: Establishment of Registry system is an important criterion for health care management system. In this study we extended Registry system which included only a few items of personal information. Data concerning epidemiologic issues and important criteria influencing the status of these patients were collected.Materials and methods: In a cross-sectional study, in cooperation with the specific diseases and organ transplantation management of Ministry of Health and Medical Education, we collected and studied data of the hemodialysis patients in our country. This study included 18, 160 patients from 428 dialysis departments. We collected demographic, clinical and laboratory data including demographic characteristics, disease duration, cause of renal disease and recorded serum levels of hemoglobin, calcium, PTH, ferritin and….., during a period of 2 months. Using SPSSv.18 software data were analyzed by t-test.Results: The mean age of the patients was 67.86±16.7 years. The most common causes of ESRD were diabetes (37.35%) and hypertension (23.9%) respectively.2.2 percent and 3.06 percent of the patients were positive for HBSAg and HCVAb respectively. Most patients (75.7%) had been on dialysis 3 times a week. Hemoglobin levels were less than 10 mg / dl in 42.3% of the patients.20.3 % of the patients had calcium levels of less than 8 mg/dl. PTH level was more than 300 mg / dl in 22.6% of the patients.Conclusion: Poor control of hemoglobin, albumin, ferritin, etc., as predictors of survival in hemodialysis patients can lead to higher mortality and development of cardiovascular disease in these patients. Control of diabetes and high blood pressure can be effective in reducing the incidence of ESRD.

Background: Cystic echinococcosis (CE) or hydatid disease is a global public health concern which imposes considerable economic costs on the communities in endemic regions. CE surveillance data are not adequately reliable. The present study reports the development and outcomes of a CE Registry in Iran. Methods: Hydatid Registry (HydatidReg) was initially established as a single-center Registry in 2014 after the ethical approval of KMU. Following a call from MoHME to promote Registry of different diseases and health outcomes, a call for participation was announced and all the Iranian Universities of Medical Sciences were requested to contribute to the Registry. Subsequently, a nation-wide Registry of hydatid disease was established in 2016. With a global perspective, HydatidReg joined the European Register of Cystic Echinococcosis (ERCE). A data collection form based on minimum dataset was designed and standard operating procedures (SOPs) were prepared to ensure standardized patient enrolment in the Registry. A biobank system with two-dimensional barcoding was established along with HydatidReg for management and organization of biological specimens. Results: As of March 2021, a total of 690 patients were enrolled in the Registry. HydatidReg registered 362 (17.3%) out of the total 2097 patients enrolled in ERCE. Quality control (QC) of the data demonstrated 91.2% completeness and 80% timeliness. In the biobank, 322 biological specimens from 184 CE patients have been deposited including 70 blood, 96 sera and 156 parasite materials. Conclusion: High-quality data in the HydatidReg Registry provided opportunities for health professionals to improve quality of care and organize meaningful research.

INTRODUCTION: The collected information includes demographic profile, medical history, physical examination, patient risk factors, anthropometric evaluation, medications, echocardiographic results, and exercise testing of all patients who participated in the outpatient cardiac rehabilitation program in Cardiac Rehabilitation Department since 1996 until now. Each patient was assigned an electronic code by which the patient's information could be identified. Subsequently, standard questionnaires were used, such as International physical activity questionnaire (IPAQ) to assess physical activity, MAC NEW to assess the quality of life, Spielberg to measure anxiety, Beck to assess depression, and nutritional questionnaires.RESULTS: The findings were recorded, and the data were analyzed by the web and SPSS software. For all patients, the forms were filled based on a number of variables including backgrounds, registration components, type of referral, diagnosis of underlying heart disease, methods of data collection and entry, details of the educational program, return to work, psychiatric condition, drug regimen, clinical condition, echocardiography findings, functional capacity and exercise test response, smoking status, nutritional habits, and finally their 5-year follow-up for events and re-hospitalization.CONCLUSION: It is necessary for the authors to establish a cardiac rehabilitation registration that can properly display care quality indicators and collect and report standard data from different nations to improve the quality of cardiac rehabilitation services and identify weaknesses.

Background: Lung cancer (LC) is the second most common and deadliest cancer in the world. Despite the control of the progressive course of LC in developed countries, studies indicate an increase in the incidence of the disease in developing countries. We designed a stepwise approach? based surveillance system for registering LC in our region (fars lung cancer Registry “FaLCaRe” Project). Materials and Methods: A questionnaire was designed and agreed upon by the steering committee using the Delphi method. Variables in nine fields were divided into three groups based on their importance: ore, expanded core, and optional. The web? based data bank software was designed. The informative site about LC and team services was esigned and launched for professional and community (www. falcare. org) educational purposes. Results: 545 variables in nine fields were esigned (20 core variables). Primary data of 39 LC patients (24 men and 15 women) with a mean age of 62 years were analyzed. Twenty? six patients had a history of smoking. Moreover, 39% and 26% of patients had a history of hookah smoking and opium use, respectively. Adenocarcinoma was the most prevalent pathologic findings in cases. More than 80% of patients were diagnosed in stages 3 and 4 of cancer. Conclusion: FaLCaRe Project with the capabilities seen in it can be used as a model for national LC registration. With continuous valid data Registry about LC, it is possible to make decisions at the national level for control and management its consequences while drawing the natural history of the LC.

Background: Idiopathic pulmonary arterial hypertension (IPAH) is a fatal disorder with a prevalence of 8.6 per million. We introduce a Registry website for IPAH and PAH patients (www. IPAH.ir) for access and efficient delivery of government-aided and subsidized antihypertensive medications.Materials and Methods: The IPAH Registry was opened in November 2009. Information of IPAH and PAH patients with a username and password were uploaded in the site. Data entry was possible only via the physicians and healthcare organizations via internet that were given a personalized username and password for entry. Following the patients’ profile submission, a scientific committee composed of a cardiologist and a pulmonologist who were selected by the Ministry of Health of Iran (MOH), evaluated the data. The eligibility of the patient to receive the medications was confirmed after evaluation. If the patient was eligible, 82% of the Bosentan cost was paid by MOH.Results: To date, one hundred and sixteen patients (82 females, 34 males) have been registered. The mean pulmonary artery pressure by right heart catheterization was 69.24±17 mmHg (ranging from 35 to 110 mmHg).Conclusion: The first online Iranian Registry program for IPAH and PAH patients is believed to supply essential information for health care providers in the field.

The Neurometabolic disorders are generally applies to monogenic diseases with a deficient activity in an enzyme, or a transporter in a pathway of cellular metabolism. This defects cause accumulation of the primary substrate or deficiency of product and lead to neurologic or developmental symptoms.Inborn errors of metabolism are individually uncommon but important diseases and many of them have neurologic manifestations. In some cases enzyme replacement therapy or diet may be effective.Noticed in their incidence (15.7/100000 live birth) and difficulties in their diagnosis, confrontation with them is not possible for all physicians and medical students and for this reason some of disease keep unknown for mentioned group. We try to instigate a site for registration of Neurometabolic cases with their history, signs and symptoms, lab tests and imaging’s.Only clinical and biochemical well-defined diseases are registered and exclusively data of patients with confirmed diagnosis are being processed.This is a collaborate project of all pediatric neurology centers in Iran and the main reason for initiating it is the fact that, in daily practice it is very difficult to find patients with metabolic diseases.There is no disease specific registration for Neurometabolic diseases, making it impossible to give reliable incidence rates for them in Iran.

One of the most important causes of disability and death in developing countries is trauma-related injuries and motor vehicle accidents. In 2016, the World Health Organization (WHO) reported approximately 15, 932 road traffic deaths in Iran, with the motorcyclist and pedestrian injuries being the leading causes (1). Therefore, all trauma information must be acquired first and ultimately interpreted and analyzed to improve decision management and macro policy making. In the United States, as an increasing need, trauma specialists and medical services developed a trauma Registry. Primarily, their effort was focused on the evaluation of trauma care in patients and trauma wards. The secondary goal was the utilization of documented data as a source of health surveillance. In recent decades, modern Registry systems were developed based on electronic data collection and use of information technology, and had successfully recorded data in primary high-turnover trauma centers (2)...