Endocrine Abstracts

JOINT1940

Introduction: Congenital adrenal hyperplasia (CAH) is an autosomal recessive disorder associated with congenital errors of steroid biosynthesis in the adrenal glands. A delayed diagnosis is associated with an increased risk of neonatal morbidity/mortality, whereas early diagnosis reduces mortality rates. Newborn screening of CAH is a cost-effective method to identify affected neonates early. Treatment is lifelong, and access to necessary medication, which is affordable and lifesaving, is unfortunately still low in Armenia. The ESPE C&CA School took place in Yerevan in 2023. During this event teachers shared knowledge and experience regarding CAH. Armenian doctors received support from the ESPE in developing and implementing a strategic plan to address unmet needs in the area of CAH, which was a great opportunity for a country with limited resources.

Aim: To initiate research into CAH, implement standardized systematic education for both patients and families with CAH and healthcare providers, to continue the evaluation and monitoring of the implemented program.

Methods: Identifying the pediatric population with CAH, creating and organizing standard educationаl program for healthcare staff, implementing of educational programming for parents and families and translating and distributing the CAH emergency cards and providing access to the online version at the www.adrenals.eu, starting the CAH newborn screening in the Capital of Armenia and regions.

Results: A newborn-screening program was started from 11 April 2024 including the capital city of Armenia. 16 168 newborns were screened, 4 cases of CAH from which were conformed. It is planned to involve into the newborn-screening program all the Armenian regions starting from April 2025. Two medical centers are involved in the process: in one center the screening is done, and these data is referred to the pediatric endocrinology center where the next investigations, management and follow-up are done. One of the challenges we meet is the lack of Synacten, less availability of hydrocortisone, as well as some financial issues. The European CAH emergency cards have been already translated into Armenian. An individual treatment plan has been created and adapted to local practices.

Conclusion: A newborn-screening for the all Armenian regions and the educational approach for pediatric endocrinologists will significantly improve the quality of CAH patient revelation and care. This approach ensures that patients and their families receive consistent and high-quality medical care and education. Now we can “speak the language” of European Pediatric Endocrinologists! More long-term follow up is needed to endure sustained benefits for CAH patients in Armenia.