NCARDRS: collecting postnatal data

Please use this form for reporting babies with confirmed congenital anomalies or postnatally suspected anomalies awaiting further testing (structural, chromosomal or biochemical).

This form should be used when pregnancy information is not available to you. Please provide mother’s details if you have them as this will help us match up mother and baby on our database.

We depend on multiple reporting mechanisms to achieve high case ascertainment so do not rely on someone else notifying us. If in doubt always complete a form and send it through to us.

For multiple births with congenital anomalies, please complete one form per infant.

Please send us as much information as you have available, don’t worry if you can’t complete all the data fields. Please attach copies of any relevant:

• scans
• clinic letters
• laboratory reports
• post mortem reports

If you are attaching any reports, you do not need to complete the results in the form as well.

You need to have access to Adobe Acrobat Reader 9 or above. You can download it for free (you might need to ask for help from your IT department).

Save a blank copy of the form and use this each time you complete a new form (you can save a copy to your desktop). You can tab or mouse click through the fields to enter the information you have. After completion, lock the form by clicking on the button at the bottom of the form and save a copy of it on a secure network directory for your information (you may want to label the file with the local PID number).

Please then send an email with the completed form and any copies of scans, clinic letters, laboratory reports or post mortem reports attached from an 'nhs.net' email address to your NCARDRS regional office 'nhs.net' email address. You can find your local NCARDRS office using the contacts button at the bottom of the page.

If you do not have an 'nhs.net' email address there are alternative options for returning the form securely. Please contact your NCARDRS regional office for more information. Do not send the forms by post.

NCARDRS provides essential data for patients, their families, clinicians, public health, research and service delivery to improve monitoring of the frequency, nature, cause and outcomes of congenital anomalies and rare diseases.

If you have any further queries or problems completing the form please contact us.