Media Release: Scottish families urged to take part in world’s biggest-ever cleft lip and palate research programme

THE Royal Hospital for Sick Children, Edinburgh, is inviting parents of children with clefts in Scotland to take part in the world’s largest ever cleft research programme, which was launched at an event in London yesterday (Tuesday 27 March).

Cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

The new, five-year UK research programme, costing £15m and launched yesterday at The Science Media Centre, is the biggest single investment in cleft research anywhere in the world, and will involve the largest DNA gene bank of its kind being set up in Bristol.

The aim is to collect DNA from all cleft children born in the UK from autumn 2012, and the programme will follow their development through to adulthood.

The Cleft Unit at the Royal Hospital for Sick Children in Edinburgh is one of only 12 specialist clinical centres in the UK which will feature in the research by involving local children and families in the study.

The programme, called The Cleft Collective, is funded by UK charity the Healing Foundation, and will be housed by the University of Bristol and the University of Manchester.

Dr Felicity Mehendale, consultant cleft and plastic surgeon at the Royal Hospital for Sick Children and Clinical Lead for the East and North of Scotland Cleft Lip and Palate Service, said: “The Royal Hospital for Sick Children Cleft Unit is a leading centre for cleft lip and palate in the UK.

“We are proud that we are now not only providing some of the best cleft care in the world, but that we are also contributing to this world-leading research study.”

Professor Jonathan Sandy, lead researcher for the Bristol gene bank, said: “Children born with cleft often face unique challenges.

These include speech and language issues, educational difficulties and broader health concerns. We do not know if these problems are caused by the genes that may be responsible for cleft or by other factors, such as lifestyle or ‘environmental’ factors.

“This study will help answer these important questions and could also solve the ultimate mystery of what causes cleft in the first place.”

Sue Carroll, acting CEO of CLAPA (The Cleft Lip and Palate Association) – the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and/or palate – added: “We at CLAPA welcome this new and exciting research programme which, over the next five years, will provide huge insights into cleft lip and/or palate. We urge as many people as possible nationwide to get involved.”

Kate Watson, chair of the Edinburgh Branch of CLAPA, added:

“We welcome this fantastic investment into cleft research. It will strive to answer many unanswered questions that we, as parents, have about why our children were born with cleft related conditions.

“Here in Edinburgh we are extremely fortunate to benefit form the expertise offered at the Royal Hospital for Sick Children. With the hospital announcing it’s involvement in this research it raises the profile of the excellent treatment and support that we as parents and our children receive here.’

The Healing Foundation is investing £5 million in the programme.

Families who want to take part should register their interest at

The University of Manchester will also host a National Clinical Trials Unit for cleft to coordinate NHS based clinical research, improving surgical procedures, therapies and care.


Notes to editors:

The Cleft Unit at the Royal Hospital for Sick Children, Edinburgh is a leading centre for cleft lip and palate in the UK and provides a nationally commissioned specialist service for children born across the East and North of Scotland, carrying out specialist surgery and procedures (including looking after babies with airway obstruction). Each year, around 50 babies are born and treated at the unit.

The unit also treats a similar number of new patients with speech difficulties, each year. Many patients are first referred after a 20 week antenatal scan picks up a cleft. Babies born with a cleft may have initial surgery as early as three months, and will continue to be followed up for further surgery, dental and orthodontic care, speech and language therapy, hearing and psychosocial support, into and including adulthood.

Follow up care is delivered as locally as possible, in multidisciplinary cleft clinics, with staff from RHSC Edinburgh travelling to work closely with local colleagues, running clinics in Inverness, Aberdeen, Dundee, Perth, Fife and Lothian.

The Cleft Collective is the world’s largest cleft lip and palate research programme. It is an initiative of the Healing Foundation, the UK charity funding medical research into all aspects of disfigurement and visible loss of function, and is supported entirely by voluntary contributions. The Cleft Collective is spearheaded by the largest DNA Biobank and Cohort Study for cleft, and a UK Clinical Trials Centre coordinating and supporting cleft research within the NHS.

Little is known about the causes of cleft lip and palate. Despite modern surgical advances, thousands of children and families affected by cleft, continue to endure painful and disfiguring surgery, impaired function (of hearing, speech and feeding) and life-long psychological and social challenges. The Cleft Collective strives to address three important questions that a parent of a cleft child may ask:

* What has caused my child’s cleft?

* Will my child be OK?

* What are the best treatments for my child?

For five years from 2012, the Healing Foundation will invest £5 million in The Cleft Collective with an additional £6 million contributed by the host research centres. More than 3,000 children and their families will be recruited to the Birth Cohort Study and many will be invited to take part in clinical trials and other studies supported and coordinated by the Clinical Trials Unit.

Interviews with Dr Felicity Mehendale and a case study family available on request.

MEDIA RELEASE posted by NHS Lothian. You too can post media releases (aka press releases) on For more information, email here.

Contact: Carol Harris
Phone: 0131 465 5652