James Lind Alliance Cleft Lip & Palate Priority Setting Partnership

THE ‘TOP 12’ PRIORITIES FOR RESEARCH IN CLEFT

LIP AND PALATE

 

Sponsored by the Craniofacial Society of Great Britain and Ireland (CFSGB&I) and CLAPA (the UK charitable organisation supporting families affected by cleft), the James Lind Alliance Cleft Priority Setting Partnership (PSP) culminated in October 2012 with its final priority setting workshop. This face-to-face workshop attracted equal numbers of people affected by cleft, their carers/parents and clinicians to come together to agree a shared list of priorities for research. This PSP was the first to embrace uncertainties not just about treatment but also the cause of, and outcomes associated with, being born with a cleft.

The decision to be inclusive was borne out by the breadth of the topics included in the final list (see Table). Throughout the 18 month process, which adhered to the now well established, robust methodology developed by the JLA to promote rigour and transparency (www.lindalliance.org), the PSP enjoyed widespread and enthusiastic support. The positive environment of engagement fostered by the JLA process highlighted the diversity of opinion within the cleft community with respect to, on what, and how scarce research resources should be invested. More than 50 uncertainties were identified by the PSP. Information about these, and the qualitative learnings arising from the process, will be made available in due course. It is hoped that the UK Cleft research community and funding bodies will acknowledge these findings and build upon them to optimise future health benefits.

November 2012, Steering Committee, JLA Cleft PSP

Katherine Cowan (JLA Chair)

Rona Slator

Tim Goodacre

Rosanna Preston

Nicky Kilpatrick

Mark Fenton (UK DUETS)


James Lind (1716-1794) is quoted saying "armies lost more men to disease then to the sword"

James Lind (1716-1794) is quoted saying "armies lost more men to disease then to the sword"

James Lind Alliance Cleft Lip & Palate Priority Setting Partnership

THE ‘TOP 12’ PRIORITIES FOR RESEARCH IN CLEFT LIP AND PALATE

  1.  What types of psychological intervention (individual therapy, community or school based) and at what time (from diagnosis to adulthood) are most helpful for patients with a cleft of the lip and/or palate and their families?
  2. What are the educational, employment and personal (eg relationships) outcomes for individuals with a cleft of the lip and/or palate during childhood, adolescence and in the long term?
  3. What is the best protocol for primary repair of both the lip and palate, including technique/timing and sequence?
  4. In individuals with a cleft of the lip and/or palate when is the most effective age to begin speech therapy?
  5. What is the best treatment for otitis media with effusion (glue ear) in individuals with a cleft of the lip and/or palate?
  6. Can stem cells be used to improve palate repair (both primary and secondary)?
  7. What interventions would enhance the educational outcomes for children with a cleft of the lip and/or palate?
  8. What is the impact of having a baby born with a cleft of the lip and/or palate on maternal/child attachment?
  9. What is the best way to manage infants with a cleft of the lip and/or palate undergoing primary surgery before, during and after hospital Eg. Fluids, pain control, antibiotics, probiotics, arm splints, feeding practices?
  10. What are the genetic and environmental causes of clefts of the lip and/or palate?
  11. How can we improve the diagnosis of cleft palate (without cleft lip)?
  12. What is the best way to prevent tooth decay in children with a cleft of the lip and/or palate?

 

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