Iranian Hydatid Disease Registry: Establishment and Implementation of a Neglected Tropical Disease Registry.

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.

The First Inherited Retinal Disease Registry in Iran: Research Protocol and Results of a Pilot Study.

BACKGROUND: To describe the protocol for developing a national inherited retinal disease (IRD) registry in Iran and present its initial report. METHODS: This community-based participatory research was approved by the Ministry of Health and Medical Education of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held. The final MDS was handed over to an engineering team to develop a web-based software. In the pilot phase, the software was set up in two referral centers in Iran. Final IRD diagnosis was made based on clinical manifestations and genetic findings. Ultimately, patient registration was done based on all clinical and non-clinical manifestations. RESULTS: Initially, a total of 151 data elements were approved with Delphi technique. The registry software went live at www. IRDReg.org based on DHIS2 open source license agreement since February 2016. So far, a total of 1001 patients have been registered with a mean age of 32.41±15.60 years (range, 3 months to 74 years). The majority of the registered patients had retinitis pigmentosa (42%, 95% CI: 38.9% to 45%). Genetic testing was done for approximately 20% of the registered individuals. CONCLUSION: Our study shows successful web-based software design and data collection as a proof of concept for the first IRD registry in Iran. Multicenter integration of the IRD registry in medical centers throughout the country is well underway as planned. These data will assist researchers to rapidly access information about the distribution and genetic patterns of this disease.

Diseases and Health Outcomes Registry Systems in I.R. Iran: Successful Initiative to Improve Public Health Programs, Quality of Care, and Biomedical Research.

Registration systems for diseases and other health outcomes provide important resource for biomedical research, as well as tools for public health surveillance and improvement of quality of care. The Ministry of Health and Medical Education (MOHME) of Iran launched a national program to establish registration systems for different diseases and health outcomes. Based on the national program, we organized several workshops and training programs and disseminated the concepts and knowledge of the registration systems. Following a call for proposals, we received 100 applications and after thorough evaluation and corrections by the principal investigators, we approved and granted about 80 registries for three years. Having strong steering committee, committed executive and scientific group, establishing national and international collaboration, stating clear objectives, applying feasible software, and considering stable financing were key components for a successful registry and were considered in the evaluation processes. We paid particulate attention to non-communicable diseases, which constitute an emerging public health problem. We prioritized establishment of regional population-based cancer registries (PBCRs) in 10 provinces in collaboration with the International Agency for Research on Cancer. This initiative was successful and registry programs became popular among researchers and research centers and created several national and international collaborations in different areas to answer important public health and clinical questions. In this paper, we report the details of the program and list of registries that were granted in the first round.

Health Research Governance: Introduction of a New Web-based Research Evaluation Model in Iran: One-decade Experience.

BACKGROUND: Governance is one of the main functions of Health Research System (HRS) that consist of four essential elements such as setting up evaluation system. The goal of this study was to introduce a new web based research evaluation model in Iran. METHODS: Based on main elements of governance, research indicators have been clarified and with cooperation of technical team, appropriate software was designed. Three main steps in this study consist of developing of mission-oriented program, creating enabling environment and set up Iran Research Medical Portal as a center for research evaluation. RESULTS: Fifty-two universities of medical sciences in three types have been participated. After training the evaluation focal points in all of medical universities, access to data entry and uploading all of documents were provided. Regarding to mission - based program, the contribution of medical universities in knowledge production was 60% for type one, 31% for type two and 9% for type three. The research priorities based on Essential National Health Research (ENHR) approach and mosaic model were gathered from universities of medical sciences and aggregated to nine main areas as national health research priorities. Ethical committees were established in all of medical universities. CONCLUSION: Web based research evaluation model is a comprehensive and integrated system for data collection in research. This system is appropriate tool to national health research ranking.