Uses, Limitations, and Validity of a Registry of Congenital Anomalies in Iran: A Critical Review

Stone, David H.; Dastgiri, Saeed; Heidarzadeh, Mohammad; Abdollahi, Hossein; Imani, Shahin; Maher, Mohammad Hassan Kargar

doi:10.1155/2017/6972617

Cited by 3 publications

(1 citation statement)

References 10 publications

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“…In Iran, the Tabriz Registry of Congenital Anomalies (TRoCA) was established using guidelines provided by the ICBDSR for data collection, coding, process, analysis, use, and evaluation of the system. The authors stated that TRoCA has successfully achieved its main objective as a pilot model for setting up a nationwide registry of congenital anomalies in Iran (Stone et al, ).…”

Section: Congenital Disorders or Birth Defects Registries In The Asiamentioning

confidence: 99%

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Thong

2019

American J of Med Genetics Pt C

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which included a set of 17 measurable "sustainable development goals" (SDGs).The SDGs included targets to end preventable deaths of newborns and children under 5 years of age by 2030, universal health care coverage, reduction of premature mortality from noncommunicable diseases (NCDs) by 33% as well as support the development and research for medicines for both communicable and NCDs. Although some successes were achieved in combating communicable diseases and improved childhood mortality rates, health systems in Asia are generally characterized by lack of accurate epidemiological information on congenital disorders, lack of human and financial resources, and inadequate focus on public health strategies to ensure targeted interventions, low level knowledge on congenital disorders amongst the community and healthcare providers and the ethical dilemma of managing rare congenital disorders in an environment of low national health expenditures. These bottlenecks must be addressed systematically and interventions such as the use of innovative epidemiological tools to overcome lack of data, increased efforts to standardize rare disease nomenclature and classification and renewed interest in birth defects registries by countries in the region must be considered. Targeted curative and public health approaches currently used in thalassaemia and neural tube defects may be used for other congenital disorders in Asian countries. The implementation of congenital disorders-related research, prevention, care, and treatment delivery services must be integrated into existing health systems in order to be effective to achieve the targets of SDG2030.

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Section: Congenital Disorders or Birth Defects Registries In The Asiamentioning

confidence: 99%

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Thong

2019

American J of Med Genetics Pt C

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Situational analysis of the surveillance of birth defects in the Eastern Mediterranean region

Yunis

Bizri

Raiby

et al. 2020

International Journal of Epidemiology

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Occurrence of Congenital Anomalies in Iran and Implications of Osr-o-Haraj "Denegation of Intolerable Hardship Rule" in Shia Fiqh

Dastgiri

Kazemi

Heidarzadeh

et al. 2020

Depiction of Health

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Background and Objectives: The aim of this study was to explain the examples of "the Jurisprudential Rule of "Osr o- Haraj" or Denegation of Intolerable Hardship in the occurrence of congenital anomalies and genetic disorders and show that according to the current laws of the country, more of these diseases can be prevented. Material and Methods: Data for occurrence of congenital anomalies were derived from two major regional and national epidemiological studies based on 6,465,849 births in the country. A comprehensive review of literature was carried out on the details of ‘Denegation of Intolerable Hardship Rule. The details of medical termination of pregnancies diagnosed for congenital anomalies and the role of ‘Denegation of Intolerable Hardship’ principle in the prevention of birth defects were explored in several Focused Group Discussions formed by peditricians, geneticists, psychiatrists, neotatalogists and expert jurisprudents. Results: The statistical estimates indicate that there are now nearly 100,000 births with one of the birth defects occurring every year in Iran. The total prevalence of the anomalies has more than tripled in the last 18 years. Conclusion: The occurrence of congenital anomalies and genetic disorders will undermine the gene pool of the population if preventive measures are not properly implemented in the community genetics services to control those disorders. According to the current law on therapeutic abortion, disorders that lead to the hardships of father, mother, family, community, as well as future generations may be diagnosed by the three specialists (before the 16th week of pregnancy, the time of onsetting the soul). They can then be referred for medical abortion. A minimum of 70,000 birth defects may be avoided using the therapeutic termination of pregnancies diagnosed for congenital anomalies if the ‘no hardship and negation of distress and constriction’ principle is suitably explored in maternal, pediatric, neonatal settings and for public health authorities.

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Uses, Limitations, and Validity of a Registry of Congenital Anomalies in Iran: A Critical Review

Cited by 3 publications

References 10 publications

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Situational analysis of the surveillance of birth defects in the Eastern Mediterranean region

Occurrence of Congenital Anomalies in Iran and Implications of Osr-o-Haraj "Denegation of Intolerable Hardship Rule" in Shia Fiqh

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