Establishing the Saudi Pediatric & Youth Diabetes Registry (SPYDR): initial data and challenges

Dubayee Mohammed Al; Juraibah Fahad Al; Amir Babiker; Haifa Alfaraidi; Raed Aldahash; Najya Attia; Shaikh Adnan Al; Abdelhadi Habeb; Jabri Aida Al; Zaben Abdullah Al; Atawi Mohsen Al; Mutair Angham Al; Muhammed Alamri; Omer Aldibasi; wan Ibrahim Al; Suliman Alghnam

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ESPE Abstracts (2024) 98 P3-74

ESPE2024 Poster Category 3 Diabetes and Insulin (36 abstracts)

Establishing the Saudi Pediatric & Youth Diabetes Registry (SPYDR): initial data and challenges

Mohammed Al Dubayee ^1,2,3 , Fahad Al Juraibah ^1,2 , Amir Babiker ^1,2 , Haifa Alfaraidi ^1,2 , Raed Aldahash ^1,2 , Najya Attia ^4,5 , Adnan Al Shaikh ^6,5 , Abdelhadi Habeb ⁷ , Aida Al Jabri ⁸ , Abdullah Al Zaben ² , Mohsen Al Atawi ^1,2 , Angham Al Mutair ^1,2 , Muhammed Alamri ³ , Omer Aldibasi ³ , Ibrahim Al Alwan ^1,2 & Suliman Alghnam ³

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¹King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia. ²King Abdullah Specialized Children Hospital, King Abdulaziz Medical City, National Guard Health Affairs, Riyadh, Saudi Arabia. ³King Abdullah International Medical Research Centre, Riyadh, Saudi Arabia. ⁴King Saud Bin Abdulaziz University for Health Sciences, Jeddah, Jersey. ⁵King Abdulaziz Medical City, National Guard Health Affairs, Jeddah, Saudi Arabia. ⁶King Saud Bin Abdulaziz University for Health Sciences, Jeddah, Saudi Arabia. ⁷Prince Mohamed Bin Abdulaziz Hospital, National Guard Health Affairs, Madinah, Saudi Arabia. ⁸King Abdulaziz Hospital, Al Ahsa, Saudi Arabia

Introduction: The Saudi National Diabetes Registry focuses mainly on adult patients. In 2020, the National Guard Health Authority (NGHA) launched the Saudi Pediatric and Youth Diabetes Registry (SPYDR), for children and adolescents with diabetes. We report on the first data and the challenges we faced during SPYDR initiation.

Methods: Patients were identified from the electronic medical records of the Saudi NGHA hospitals using International Classification of Disease (ICD-10). A trained coordinator verified the diagnosis and entered patients’ details into the registry and a random sample was validated by experienced endocrinologists. The data were analyzed according to patients’ demography, diabetes subtypes, duration, control, and complications. The challenges faced the team were identified and addressed.

Results: At the time of manuscript submission, 2344 individuals were enrolled. Their mean age at diagnosis was 9.08 (±4.27) years and 1,136 (48.46%) were females. Of these, 91.3% have type 1 (T1D) and 6.4% have type 2 diabetes (T2D). The mean HbA1c was 10.45% (±2.36) and duration of diabetes was 5.31 (±3.05) years. The main challenges includedCOVID-19 pandemic, data validation and centers’ participation. However, within 12 months of initiation enrolled subjects matched the expected number.

Conclusion: Despite the challenges, the first step of SPYDR was achieved. The initial data confirmed that T1D is the commonest form of childhood diabetes, and the frequency of T2D is comparable to regional and international data. SPYDR provides infrastructure to data sharing and national, regional and international collaborative research on childhood diabetes. The plan is to enroll more patients from other Saudi healthcare institutes.