In preparation for the 2026 birth defect report – below is the spreadsheet with detailed instructions and data format. A few key items:
– Reporting period is 2020 to 2024. If 2024 is not available, report through the last year you have available.
– Please use the data worksheet to report the data, one line per condition. If submitting multiple years, use the same data worksheet, staking the years one on the other.
– If you do not collect or report an anomaly, please use the flag variables in the datasheet to let us know that. Doing this will let us tell the difference between a zero (no cases) and a missing (cases identified but not reported because of registry policy, or anomaly not included in the registry).
– Provide denominators in the same worksheet. For each years, these will be repeated row by row, except for the rows of Down syndrome, where you will place the maternal age denominators for the appropriate maternal age group.
– We have clarified the birth defect definitions and included their associated ICD-10 codes. A special thanks to Dr. Jorieke Kammen-Bergman and Dr. Florence Rouget for the crucial help and review.
– Although the list of anomalies is mostly unchanged, please note the few small additions and deletions. We removed undescended testis and added clubfoot, and some groups have been made more granular (e.g., hypospadias, renal anomalies) in order to better understand the variations
We are also collecting 2025 data at this time and this should be sent in a separate file by May 30, 2026.
We have made a short tutorial video for the data submission file. View the video HERE.
If unsure or questions, please contact us before sending the data so we can streamline your work (and ours).
Please contact us at centre@icbdsr.org, with cc to lorenzo.botto@hsc.utah.edu and matthew.reeder@hsc.utah.edu.
Thank you – we are looking forward to working with you on an improved and informational report.
Lorenzo, For the ICBD team
ICBDSR 2026 Data Submission form
