The Cleft Collective Study

Variable search tool for the Cleft Collective resource

About the Cleft Collective

The Cleft Collective is a longitudinal cohort study looking to investigate the biological and environmental causes of cleft, the best treatments of cleft and the psychological impact of cleft on those affected and their families. The study comprises two separate cohorts, a Birth Cohort and a 5-year-old Cohort. Recruitment to these two cohorts is ongoing across the UK. The study collects a number of different data from multiple sources and should be considered a resource for collaborators.

For more information about the Cleft Collective please refer to the Cleft Collective protocol paper which can be found here:

     


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The Cleft Collective dataset

This website proovides a tool to search the variables that are available within the Cleft Collective resource.

Click on the button or select "Variables" from the ribbon to search variable within the resource. You will also be able to select and download a list of variables you require to answer your cleft related research questions. Once you have created a list of required variables please add your data request to your research proposal, details of which can be found in the "Accessing the Cleft Collective Resource section on this page.


Based on source code at https://github.com/explodecomputer/alspac-shiny

Accessing the Cleft Collective resource

Data access policy 20th April 2026

Before applying to use the Cleft Collective resource please read the Data Access Policy thoroughly.

     

Submitting a proposal 20th April 2026

To access the resource please submit an online proposal using the Online Proposal System which can be found using the following button:

     

The proposal form will ask you about the applicant team and your research question. Should you require any assistance please do not hesitate to get in touch at cleft-collective@bristol.ac.uk.

Once you submit your proposal form it will be sent to the Research Coordinator who will triage your proposal. If there are any queries the Research Coordinator will get in touch to ask for your proposal to be updated. Once your proposal has been through triage it will be circulated to the Project Management Group who will respond to your proposal within six weeks of submission.


Browse available data


The Cleft Collective Study

Instructions Click to expand/hide

Please use the search box to find the variable needed. You may search by words that descibe the variable or by the question number within the questionnaire. Please use the keys below to determine the time point and responder of the question and questionnaire selected. You may filter by questionnaire at the top if this is easier. The variable search tool is a working resource and will be updated regulary. If you cannot find a specific variable or you would like to suggest synonyms for particular variables please get in touch at cleft-collective@bristol.ac.uk. UTo select variables to build your variable request please click on rows to select the relevant variables. Click the Download button to download a csv of the variables that you have selected


These rows are currently selected:


                  

                

              

              

                

                  

                  
Variable keys Click to expand/hide


                  

ccanm_blq Mother's baseline questionnaire for the antenatal arm of the birth cohort



ccanf_blq Father's or mother's partner baseline questionnaire for the antenatal arm of the birth cohort



ccpnm_blq Mother's baseline questionnaire for the postnatal arm of the birth cohort



ccpnf_blq Father's or mother's partner baseline questionnaire for the postnatal arm of the birth cohort



cc5ym_blq Mother's baseline questionnaire for the 5-year-old cohort



cc5yf_blq Father's or mother's partner baseline questionnaire for the 5-year-old cohort



ccpnm_18m Mother's 18-month questionnaire



ccpnf_18m Father's or mother's partner 18-month questionnaire



ccpnm_3yr Mother's 3-year questionnaire



ccpnf_3yr Father's or mother's partner 3-year questionnaire



ccpnm_5yr Mother's 5-year questionnaire



ccpnf_5yr Father's or mother's partner 5-year questionnaire



cc5ym_8yr Mother's 8-year questionnaire



cc5yf_8yr Father's or mother's partner 8-year questionnaire



cc5yc_8yr Child's 8-year questionnaire



cc5ym_10y Mother's 10-year questionnaire



cc5yf_10y Father's or mother's partner 10-year questionnaire



cc5yc_10y Child's 10-year questionnaire



cc5ym_12y Mother's 12-year questionnaire



cc5yf_12y Father's or mother's partner 12-year questionnaire



cc5yc_12y Child's 12-year questionnaire



cc5ym_15y Mother's 15-year questionnaire



cc5yf_15y Father's or mother's partner 15-year questionnaire



cc5yc_15y Child's 15-year questionnaire



cc_ssf Short surgical form



cc_lsf Long surgical form



ccbil_lsf Long surgical form - bilateral cleft lip repair



ccuni_lsf Long surgical from - unilateral cleft lip repair



ccpal_lsf Long surgical from - palate repair



ccsl_lena Cleft Collective Speech and Language Study - LENA data



ccsl_13m Cleft Collective Speech and Language Study - 13-month parent questionnaire



ccsl_24m Cleft Collective Speech and Language Study - 18-24 month speech assessment



ccsl_36m Cleft Collective Speech and Language Study - 36-month speech assessment



ccslslt_is Cleft Collective Speech and Language Study - Intervention Survey



cc_cvd19 COVID-19 parent questionnaire