LAUSR

Aims Globally, more then 3 00 000 newborns die annually within the neonatal period due to congenital anomalies. The aim of this study was to develop a methodologically robust Core Outcome Set (COS) for a congenital abnormalities surveillance programs for resource-limited settings. Methods A three-round, modified Delphi-study was undertaken between April and June 2017. A literature and internet search (Round-1) to develop a draft-COS was followed by open (Round-2) and closed (Round-3) questions of experts. Results In Round-1; an initial draft-COS of 136 outcomes was created from a review of 15 African research studies and 14 international congenital abnormality surveillance tools. 36 and 34 participants took part in Rounds-2 and 3 respectively. Thirty-two new outcomes were added by participants in Round-2. 103 (61.3%) of the 168 outcomes, met the pre-defined consensus criteria for Round-3. Conclusion There is currently no congenital abnormalities registry in Rwanda. In establishing such a registry, the first step is to identify the ‘Core Outcome Set’ to ensure that the final results of future research are meaningful and employable. This is the first Core-Outcome Set for congenital abnormalities identified in the literature. It has been developed for use in Rwanda but is highly relevant for use in the region and other resource-limited settings.Abstract G273(P) Table 1 Outcomes within each domain for the Core Outcome Set (COS) during each Delphi round Round-1 Round-2 Round-3 COS domain Number of outcomes described in ≥ 2 journals/repositories New outcomes Final outcomes for the COS Patient (infant) details 17 1 6 Maternal details 15 1 7 Paternal details 3 4 3 Risks during pregnancy 9 4 11 Current pregnancy 3 2 2 Investigations performed 2 3 3 Clinical features of anomalies 72 5 52 Syndrome/diagnosis 10 6 16 Death information 1 2 2 Contact information of reporter 4 2 1 TOTALS 136 32 103