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hrp0095p1-433 | Bone, Growth Plate and Mineral Metabolism | ESPE2022

Challenges in the management of infantile hypophosphatasia: revisiting the importance of supportive therapy in limited-resource settings

Fadiana Ghaisani , Tridjaja Bambang , B Pulungan Aman , RL Batubara Jose , Soesanti Frida

Background: Infantile hypophosphatasia (HPP) is an ultra-rare condition that may lead to debilitating morbidity and mortality. The prevalence of HPP in Indonesia is unknown. Enzyme replacement therapy or asfotase alfa, a bone-targeted recombinant alkaline phosphatase, can improve clinical outcome and prognosis of the patients, particularly those with severe type of HPP. The complications of HPP may be life-threatening and contribute to higher mortality in youn...

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hrp0095p1-292 | Fetal, Neonatal Endocrinology and Metabolism | ESPE2022

Management and outcomes of congenital hyperinsulinism in infants and young children: a 5-year-experience from the tertiary referral hospital in Indonesia

Fadiana Ghaisani , Soesanti Frida , B Pulungan Aman , Tridjaja Bambang , RL Batubara Jose

Background: Congenital hyperinsulinism (CHI) is a rare condition that becomes the most frequent cause of severe and persistent hypoglycemia in infants and young children. It may lead to debilitating morbidity and mortality if being diagnosed lately. Congenital hyperinsulinism can be caused by monogenic or syndromic disorders. The prevalence of CHI in Indonesia is still unknown. However, the increasing number of cases referred to the tertiary hospital recently ...

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hrp0097p1-48 | Diabetes and Insulin | ESPE2023

Changing Diabetes in Children Indonesia: Public-private partnership to improve healthcare access for children and adolescents with type 1 diabetes mellitus

B. Pulungan Aman , Amalia Gassani , Septira Salsabila , Vathania Nabila , Faizi Muhammad , Fadiana Ghaisani

Background: In 2022, 1.52 million children and adolescents worldwide were diagnosed with type 1 diabetes mellitus (T1DM). During COVID-19, diabetic ketoacidosis (DKA) episodes in newly-onset and established cases increased in 44.2% and 30.1% of paediatric diabetes centres, respectively. In 2017-2019, 1,249 children were diagnosed with T1DM in Indonesia, and 70% were diagnosed with DKA at diagnosis in 2017. Changing Diabetes in Children (CDiC) is a public-priva...

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hrp0097p1-8 | Adrenals and HPA Axis | ESPE2023

Congenital Adrenal Hyperplasia (CAH): Situation and Possibility to Develop a Newborn Screening in Indonesia -- An Exploratory Study

Pulungan Aman , Armstrong Kate , Fadiana Ghaisani , Idaayen Fatima , Waladhiyaputri Vahira , Patricia Chandra Angelina , Fadia Ratnasari Amajida , Arnetta Puteri Helena , Utari Agustini

Introduction: Indonesia, an archipelago with approximately 17,000 islands and 34 provinces has around 4.8 million babies born annually, yet only 2-3% undergo newborn screening (NBS) resulting in high preventable disease burdens. Currently, the country only has 1 newborn screening project which will be relaunched and aimed to cover 30-40% of babies. Health policy plays a huge role in determining the day-to-day lives of children, families, and health professiona...

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hrp0097p1-244 | Diabetes and Insulin | ESPE2023

Knowledge of healthcare practitioners before and after paediatric T1DM diagnosis and management training

B. Pulungan Aman , Faizi Muhammad , Amalia Gassani , Septira Salsabila , Vathania Nabila , Fadiana Ghaisani , Citra Ismail Ismi , Sugih Arto Karina , Mayasari Lubis Siska , Deliana Melda , Dewi Saraswati , Nuri Ahmad

Background: An underestimated figure of 1,249 children with type 1 diabetes mellitus (T1DM) was diagnosed in Indonesia from 2017 to 2019. In 2021, there were around 0.05 paediatricians per 1,000 children in Indonesia. Only 1.2% (n=54) were pediatric endocrinologists practising in 17 out of 38 provinces populating urban areas in Indonesia. Therefore, Changing Diabetes in Children (CDiC) Indonesia, a public-private partnership, has delivered training fo...