BINOCAR Registers

British and Irish Network of
Congenital Anomaly Researchers

Data Request


BINOCAR data requests may concern:

1. aggregate numbers of cases

2. data file of individual records


Before submitting a data request, applicants are advised to:


1. Determine if this work is novel by consulting:

a. the full publications list, reports and papers 


2. Determine if the data are already available by consulting:

a. the prevalence data tables where users can specify registers, congenital anomalies and years of interest;

b. the key public health indicator tables where there are data on rates of terminations of pregnancy and perinatal mortality;

c. the prenatal detection rate tables where users can specify congenital anomalies


3. Determine if anyone else is carrying out this work by consulting the list of current projects


4. Determine if you can fully comply with the BINOCAR terms and conditions by consulting:

a. BINOCAR terms and conditions (coming soon)


5. Contact the BINOCAR Management Committee:

Applicants are advised to get in contact early in the process, while the project protocol is being put together. The BINOCAR Management Committee will be able to tell the applicant if the data will be able to answer the research questions, give an idea of the data extract costs for funded projects and assign a member of BINOCAR to work closely with the applicant on the project.


All data requests are subject to approval from the BINOCAR Management Committee and permission from the specific individual registers.


Word doc Download the Data Request Form (Word | 224KB)


PDF logo Download the Terms and Conditions (PDF | ) (coming soon)