At an event held to mark the World Spina Bifida Day at Lady Ridgeway Hospital for Children on 25-10-2022, Dr. Uditha Perera (Consultant in Health Informatics and Secretary, SLCHI) delivered a lecture on the importance of establishing a National Birth Defects Registry (NBDR). The audience included representatives from Sri Lanka College of Paediatricians, Perinatal Society of Sri Lanka, Family Health Bureau as well as medical specialists in rheumatology, neurosurgery, orthopaedics, nephrology and neurology involved in the management of spinal dysraphism.
Dr. Uditha Perera highlighted the need for an integrated NBDR that ensures that no patient is left behind, coordinating care among the multidisciplinary team and provides the basis for the sampling frame on research activities in this area. He emphasised a practical and pragmatic approach to the data collection and data sharing mechanism. While discussing the reasons for failure of such attempts to establish registries all around the world, he called for greater collaboration among Colleges including the SLCHI to establish a Minimum Clinical Dataset in the context of the NBDR.