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RESEARCH PROJECTS

Crescent Kids Research Strategy

CRESCENT KIDS has a broad range of interest in the field of paediatric hepatology. This strategy identifies the priorities for funding in CRESCENT KIDS’ Research Funding Programme for 2021-2026 and further initiatives aimed at supporting research into paediatric hepatology. The availability of funding will always influence CRESCENT KIDS’s programmes.

This strategy is based on CRESCENT KIDS’s current and projected income levels. However, there is flexibility if the situation changes. CRESCENT KIDS will look to fund a PhD Fellowship and main grants round, alternating on a two-year cycle. We will also look to opportunities to work with allied organisations to joint fund the main grants round during the strategy period.

Priorities for paediatric haemoglobinopathies research funding 2015 -2020

The following are identified as priority areas for research funding:-

  • Biobank and bio-markers

  • National Paediatric haemoglobinopathies Diseases Register

  • National Register of long term outcome for Marrow transplant

  • Research into primary paediatric haemoglobinopathies disease (all conditions

  • Prevalence/epidemiology

  • Aetiology

  • Different treatment modes

  • Outcomes

  • Neonatal cholestasis

  • Outcomes in adults of childhood haemoglobinopathy diseases, including bone marrow transplant and gene therapies

  • Clinical research including relevant drug trials in children and the long term effects of medication

  • Social research for all ages and including adults diagnosed in childhood to include definition, measures and interventions in the following areas:-

  1. Quality of life

  2. Survivorship

  3. Transition to adult services

  4. Compliance and adherence

Underlying principles in research delivery

In funding and delivering its research programme, the following underlying principles will be paramount:-

  • CRESCENT KIDS gives preference to multi-centre, collaborative research

  • CRESCENT KIDS encourages research that focuses on added value

  • CRESCENT KIDS is keen to identify how and where its research portfolio fits into the wider research programme and agenda

  • CRESCENT KIDS recognises that given its funding available it is more likely to fund work in the early stages of research topic continuum, particularly when it is one which is capable of being taken from bench to bedside. It will monitor its programme for up to seven years beyond the end of a project

  • CRESCENT KIDS expects dissemination of outputs and outcomes to both lay and professional audiences

  • CRESCENT KIDS recognises the importance of the national and international research picture including the National Institute for Health Research (NIHR) and will take note of topical issues in applying its research priorities

  • CRESCENT KIDS will expect its Principal Investigators to know of and apply to relevant networks and schemes beyond CRESCENT KIDS funded research

  • Research teams are expected to think ‘outside the box’ and are expected to consider enabling European and other collaborations

  • CRESCENT KIDS Research Funding Mechanisms

 

CRESCENT KIDS will fund research using the following mechanisms:

  1. Project Grants encompassing:

  2. Up to 3 years of funding

  3. Staff costs

  4. Consumables costs

  5. CRESCENT KIDS PhD student fellowships

  6. Small Grants Programme

CRESCENT KIDS Research Hub

CRESCENT KIDS will create projects during the strategy period, which increase opportunities for families and young people to learn more and be involved in research within the field. As part of this CRESCENT KIDS will aim to increase formal patient and public involvement in the design of research projects across the sector by creating a Research Hub, for researchers to obtain feedback from families and young people about the projects they are developing. By providing vehicles for such support CRESCENT KIDS could play a role in enabling a greater number of paediatric haemoglobinopathies disease related research projects to be funded and undertaken.

Strategy Review and Development process

This strategy has arisen out of a consultation over a period of nine months and incorporated consultation with the following stakeholders:

  • Young People

  • Parents

  • CRESCENT KIDS Scientific Committee

  • Medical Professionals


The consultation took place via a variety of routes:
Advice from the Cochrane collaboration prioritization exercise in Haemoglobinopathy research.
Surveys of parents and young people circulated via social media platforms and direct invitation.
A residential consultation weekend with families and young people.
Discussion and ratification made at Scientific Committee and Trustee Board Meetings.
Trustees