How can I get involved?

There are a number of ways that you can get involved with The Cleft Collective. If you are eligible to take part in The Cleft Collective Cohort Studies (please see eligibility criteria below), please speak to your cleft team for further information. If you are not eligible to take part in the Cohort Studies, there are still many ways you can contribute.

The Cleft Collective Cohort Studies

You are eligible to take part in The Cleft Collective Cohort Studies if:

• Your child has recently been diagnosed with a cleft and has not yet had their first operation
• Your child born with a cleft turns five years old during the recruitment period
• You previously took part in the Cleft Care UK study (also known as CSAG II)

If you are eligible to take part in The Cleft Collective Cohort Studies then please contact your local cleft team for more information and to receive your Starter Pack. You can find contact details for your local cleft team via the Cleft Lip and Palate Association website.

All families will be eligible to take part regardless of the type of cleft the child has, or the presence of additional conditions/syndromes. Although we would like all members of the family to participate in our research, we need the biological mother and child as a minimum for a family to be eligible.

Join our mailing list

By joining our mailing list, you will be able to receive:

• Our twice yearly newsletters containing updates about our progress
• Opportunities to take part in other cleft research and events
• Opportunities to take part in Patient and Public Involvement (PPI) activities (please see below for more information about PPI)

If you would like to join our mailing list then please contact us.

Patient and Public Involvement (PPI) in research

Patient and Public Involvement (PPI) ensures that research is “being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE).
This means that rather than simply be the ‘subject’ of research, members of the public who have first-hand experience of a health condition can become much more involved in the research process itself, for example:

• Helping to prioritise which research questions get answered (for an example please visit the James Lind Alliance website)
• Helping to design the research protocol
• Helping to design the research materials (such as leaflets and questionnaires)
• Helping to carry out the research and collect data
• Helping to disseminate the research findings (for example, at conferences and in written articles)

If you are interested in taking part in our PPI activities, please contact us. For more information about PPI, please visit the INVOLVE website (www.invo.org.uk).

Contribute to our Image Bank

We are collecting photographs to store in our Image Bank and use in our presentations, leaflets, posters, website and so on. Many families have already shared their photographs with us and seen their children in the news! If you would like to contribute to our Image Bank, please contact us for further information.

Follow us

The Cleft Collective is on Facebook and Twitter.

Contact us

Please get in touch.

Without our help there may never be an answer to the question of 'why?' That is the reason I value the opportunity to participate in the research. I can't change the fact that my baby has a cleft, but I can help to provide answers for future generations.

Rachel McDermott, mum of Emily, who was born with a unilateral cleft lip and gum

Sarah with her parents Suzanne and Robert after completing the Paris Marathon to raise funds for The Cleft Collective Cohort Studies.

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