Strengthening Early CAH Diagnosis Through Health-Worker Capacity Building for Newborn Screening in Uganda
The Uganda team will design and test the acceptabiliy, feasibility, and scalability of a health worker capacity building and leadership strengthening newborn screening intervention of the early identification of children with Congenital Adrenal Hyperplasia (CAH) at Kawempe National Referral Hospital in Uganda. The specific objectives include exploring the knowledge, practices, and attitudes towards newborn screening for CAH, delivering a relevant and acceptable screening package for health workers, and establishing referral pathways to pediatric endocrinologists.
The team will use the Community Development Grant to conduct a pre-post evaluation study at Kawempe National Referral Hosptial, engaging district health sector leadership to identify health sector champions, and exploring current newborn screening practices. Based on assessments an stakeholder feedback, they will finalize and implement an intervention model for healthcare workers, including pediatricians, obstetricians, gynecologists, nurses, midwives, and laboratory staff. The outcomes include training 250-300 healthcare workers, screening of 50% of newborns at Kawempe National Referral Hospital for CAH, and establishing national referral pathways for CAH babies. The CAH community in Uganda faces challenges such as high treatment costs, delayed diagnosis, lack of awareness among healthcare workers, limited data, restricted access to specialized care, and absence of support groups. This project addresses these challenges by increasing awareness, building healthcare worker capacity, conducting research, and establishing referral pathways.
By engaging district health leaders and hospital administrators, the project will identify champions within the health sector who can advocate for sustainable newborn screening programs. The initiative also aims to establish clear referral pathways for suspected CAH cases, ensuring timely specialist intervention and continuity of care.
The long-term goal is to scale newborn screening efforts nationally, improving early detection rates and access to pediatric endocrinologists for affected children. At the community level, families will benefit from early diagnosis and direct linkage to specialized care, reducing health complications and financial burdens associated with late CAH diagnosis.