The Cleft Collective Cohort Study is a unique resource for investigating the causes of cleft, the best treatments for cleft and the impact of cleft on those affected and their families.
From over 3000 families to date, the dataset is available for researchers and clinicians around the globe to access and use to investigate the three key questions which parents often ask:
- What caused my child’s cleft?
- What are the best treatments for my child?
- Will my child be OK as he/she grows up?
The Cleft Collective resource includes biological samples, questionnaire data, speech recordings and clinical and educational data.
Details on how to access the data are provided in the Cleft Collective website, which includes our data access policy and research proposal form together with a data dictionary detailing the data which are currently available.
Please do contact the Cleft Collective directly by email: firstname.lastname@example.org to discuss your research question as the team is there to support you in any way they can. They can also discuss the potential of setting up nested studies, where new data is collected on a subsample of the cohort.
Families of children born with cleft lip and/or palate in the UK are invited to participate in the study either before or after the birth of their child, or when their child attends their five-year audit clinic. They are asked to provide biological samples (cord blood, saliva, child’s blood and tissue) and to complete questionnaires at key points during their child’s development (at recruitment, 18 months, 3 years, 5 years, 8 years and 10 years). We are also asking permission to access the families’ medical and educational records, and are running additional studies, including a Speech and Language study which collects audio recordings, hearing records and assessment forms completed by Speech and Language Therapists.
We are extremely grateful to all of the families who are taking part in this important study, and to the NHS cleft teams who are involved in recruitment and data collection. Thank you also to our funders, which include The Scar Free Foundation, VTCT, the Underwood Trust, as well as the Cleft Lip And Palate Association (CLAPA) and the members of our Patient Consultation Group for their continued support of this ambitious project.
Tel: +44 (0)117 3310025