Information for Researchers

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Opportunities for Researchers & Health Professionals

The Cleft Collective have a huge bank of recent, detailed data which they are willing to share with any researchers looking at starting a project. If your project involves children born with a cleft lip and/or palate in the UK, please check with them before planning your data collection, as they may be able to supply all or part of the data you need. Find Out More.

Please email [email protected] if you have an opportunity you would like us to share here.

How CLAPA Can Help with Research

CLAPA has a community of over 20,000 parents, family members, young people and adults affected by cleft in the UK, as well as health professionals and researchers.

While CLAPA does not directly fund cleft research projects, we are happy to support your work by publicising studies and plain English research summaries. There are a number of services we offer to researchers as standard, such as publicising a study on our website, and other services for which we charge consultancy rates, such as involving one of our consultation groups.

Advertise your study

Are you recruiting participants or panel members for a new study? If it is on a topic we consider to be of interest to our community, and you have approval from an ethics board, we will happily publicise it for you.

Please write a plain English advertisement for your study and explain exactly what you are looking for in participants/panel members, including time commitments, closing date(s) and any compensation. You can send it to us at [email protected], and if we believe it is relevant we will publish it as soon as possible and alert you when this has been done. Please include any photos we can publish along with your summary.

Read about what we can offer free of charge and what will incur consultancy rates.

If you have any questions, please contact us at [email protected] or call Anna Martindale (Communications & Information Manager) on 020 7833 4883 for an informal chat.

See existing research advertisements

Submit a Research Summary

If you’ve finished your research project and would like to publicise the results, please write a plain English summary and send it to us at [email protected] Please include any photos we can publish along with your summary.

The summary should be no more than 750 words (around 2 sides of A4), and any medical terms must be defined simply. If we believe your summary is relevant to our community, we will publish it as soon as possible and alert you when this has been done.

If you have any questions, please contact us at [email protected] or call Anna Martindale (Communications & Information Manager) on 020 7833 4883 for an informal chat.

See existing research summaries.

Cleft and Craniofacial Clinical Studies Group (CSG)

National Institute for Health Research Clinical Research Network: Children

The National Institute for Health Research (NIHR) Clinical Research Network (CRN) provides researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part. We work collaboratively with our counterparts in the Devolved Nations where similar arrangements exist to support clinical research.

The Children Specialty is one of 30 specialties which bring together communities of clinical practice to provide national networks of research expertise. It is made up of research-interested clinicians and practitioners who work at both national and local levels to ensure the studies that are included in our national portfolio of research are delivered successfully in the NHS. By “successfully” we mean ensuring that studies recruit the right amount of patients within planned timescales.

CRN: Children Cleft & Craniofacial Anomalies Clinical Studies Groups

The Cleft & Craniofacial Anomalies Clinical Studies Group (CSG) is one of which have been established within CRN: Children to cover the different specialty areas across child health. This CSG covers children with congenital craniofacial anomalies. It is a fully integrated group with representatives from supra regional craniofacial and regional cleft lip/palate teams.

The group includes consumers, speech and language therapists, specialist nurse, clinical psychologists, paediatrician, surgeons, geneticists, orthodontists and active researchers. Representatives of CRN: Children, the Craniofacial Society of Great Britain and Ireland, the Healing Foundation, the Cleft Collective and CLAPA are also on the group. It is responsible for developing and overseeing a comprehensive Portfolio of clinical trials and related studies covering the full spectrum of craniofacial anomalies including cleft lip and/or palate.

Read the latest Clinical Studies Group Brochure

Email: [email protected]

Phone: 0151 282 4709

Other Resources

James Lind Alliance Research Priorities: Cleft Lip and Palate

A list of the top twelve uncertainties in cleft lip and palate research

INVOLVE

Supporting public involvement in NHS, public health and social care research

NIHR, Evaluation, Trials and Studies (NETS)

The NIHR, Evaluation, Trials and Studies (NETS) programmes fund valuable independent research for health and social care decision makers.

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