About CHECT research
Research is a vital part of the fight against retinoblastoma. Our aim is to support world class research that will improve our understanding of Rb as well as clinical research into effective treatments and reducing the negative impact on those affected.
While the annual grant round provides the main stream of CHECT funding for research, we may from time to time decide to award further grants or consider applications outside of this round. We will also consider proposals to co-fund projects in partnership with other funding bodies. In these circumstances appropriate peer review process will be applied. We are a member of the Association of Medical Research Charities (AMRC). All AMRC members support the AMRC position statement on the use of animals in research.
Applications now open for 2018 research funding round
We are currently inviting applications to the CHECT research fund for grants up to the value of £55,000. Our grant funding is allocated to research teams based in the UK and abroad, attached to recognised academic or medical institutions. This can be to fund:
- clinical research into treatments and outcomes for Rb so that treatment is more effective and the negative impact on those affected is reduced;
- psycho-social research into the effects of having Rb so that ways to reduce the negative impact on those affected can be developed; or
- laboratory-based basic science research to improve the understanding of the molecular mechanisms and genetic basis of Rb.
While CHECT continues to invite submissions for research proposals exploring the whole field of retinoblastoma research, following a recent Members’ Event to celebrate our 30th anniversary, CHECT’s members have identified particular areas of psychosocial research that are important to them and further detail of these areas is given in this Appendix
Studies should aim to show impact through the creation of new knowledge and address at least one of the following:
- Inform the charity in how it delivers ongoing support to children, families, young people, and adults affected by Rb and its treatment
- Provide useful information for agencies with statutory responsibilities for visually-impaired children
- Be independently useful to adults who live with Rb.
CHECT welcomes any applications that fall within its Research Strategy , and the Scientific Advisory Committee considers all applications for research funding against an agreed matrix. It is expected that the majority of research funded by CHECT will have the potential to demonstrate benefit to those affected by Rb within the short to medium term, normally considered to be five years from the grant end date.
Applications for funding must be submitted by 20 April 2018 on the attached standard form and sent to email@example.com and in hard copy with original signatures to the CHECT office, for the attention of Petra Maxwell. Researchers will be notified of the outcome of their application by July 2018.
Scientific Advisory Committee
While the CHECT trustees are ultimately responsible for the research strategy and grant awarding of the charity, a CHECT Scientific Advisory Committee (SAC) exists to assist the CHECT trustees in these responsibilities. The committee members are:
Dr Lorna Fraser (Chair)
I am a trustee of CHECT and a survivor of bilateral retinoblastoma having had one eye removed and radiotherapy on the other in 1979.
I initially trained as a Paediatrician, graduating from the University of Aberdeen’s medical school in 1999 and becoming a member of the Royal College of Paediatrics and Child Health in 2002. I then changed career path and completed a PhD from the School of Geography at the University of Leeds in 2012.
I now work as a Senior Lecturer in Paediatric Epidemiology at the University of York and I am the director of the Martin House Research Centre. My main topic area is chronic and life-limiting conditions in childhood and the use of routinely collected data in research. I have had or currently hold research grants from the major funders in the UK including the NIHR and MRC as well as charity grants. I am also a member of the Health Research Authorities Confidentiality Advice Group.
Dr Tassos Georgiadis
I am a senior research associate at UCL/Institute of Ophthalmology. I have been working in gene therapy research for more than a decade particularly on viral gene therapy for the treatment of retinal degeneration. During my PhD I focused on virally-mediated RNA interference in the retina and I am currently concentrating on optimising AAV clinical trial vectors for treating patients with inherited retinal disorders such as Leber congenital amaurosis and achromatopsia.
I am also studying the miRNA transcriptome in the retina as well as the use of AAV or lentiviral vectors as RNA interference mediators for allele-specific and allele non-specific knockdown of dominant gene mutations causing retinitis pigmentosa and macular degeneration. I aim to bring my specialty in molecular genetic research and translation of pre-clinical studies to the committee to aid in the selection of promising and innovative projects by CHECT that will ameliorate the treatments and living standards of patients with Rb.
Mr Manoj Parulekar
I am a paediatric ophthalmologist at Birmingham Children’s Hospital, one of the two national treatment centres for retinoblastoma. I work as part of a multidisciplinary retinoblastoma team, and also have a wider paediatric ophthalmology practice, with special interest in reconstructive surgery following enucleation, and radiotherapy.
I contribute to an active research programme, both basic science as well as clinical, and contribute to several learned bodies including the International RB Staging Committee. I hope to bring this experience to my role of assisting the SAC and trustees to achieve CHECT’s research goals.
Iain joined the SAC as a lay member in 2015. A PhD student researching nineteenth century UK social politics, Iain has previously worked on community leadership and faith-based social action in Wolverhampton and Telford. Over the last four years he has been based in Gloucester focused on developing the Voice of Disabled People through leadership skills in Gloucestershire and studying for an MA in History with the Open University. Having had Rb as a child, Iain is now an active member of the Beyond Rb adult survivors group.
Dr Esther Dempsey
I am a registrar in Clinical Genetics at the South West Thames Regional Genetics Service based at St George’s Hospital in London. My academic career has included a BSc in Human Biology followed by a fast-track medicine course at King’s College London. In 2014 I undertook an MSc in Prenatal Genetics and Fetal Medicine at University College London. During this study my interest in Rb was sparked as I was tasked with developing an application to the HFEA for Pre-implantation Genetic Diagnosis for a couple affected by Rb. I am soon to embark on a higher research degree in prenatal genetics.
Having been working in both paediatrics and Clinical Genetics I was honoured to be asked to join the CHECT SAC to contribute my experience in these areas.
Dr Jennie Robertson
I’m a Clinical Psychologist working in the Paediatric Liaison Team (PLT) at the Royal London Hospital. As part of my role, I spend two days a week with the Retinoblastoma Service. This involves assessing children and their families for psychological distress, and providing 1:1 support or facilitating referrals to local services. I also co-facilitate Sib Squad (a group for siblings of children living with cancer), and run a group for children, young people and their carers affected by chronic illness (which has been accessed by several Rb families). I also do a significant amount of liaison and joint-working with other professionals within the hospital, as well as with outside agencies including schools, charities and Social Care. Another part of my role is running a fortnightly psychosocial meeting in which the psycho-social needs of Rb patients are discussed by the multi-disciplinary team. I feel very fortunate to be the only psychologist running a dedicated Rb service in the UK, and to be part of such a fantastic team.
Dr Jed Stevenson
I am a medical anthropologist with research interests in child development across cultures. My work centres on Africa – especially Ethiopia and Congo – and much of it is carried out in collaboration with charities promoting community health. I am currently teaching fellow in Medical Anthropology at University College London, and adjunct assistant professor in the Rollins School of Public Health at Emory University (USA). I also have experience of raising a child with retinoblastoma, and am a trustee of CHECT.
I am an epidemiologist and currently Lead on Childhood Cancer with the National Cancer Intelligence Network, Public Health England. I was previously for many years Senior Research Fellow and Director of the National Registry of Childhood Tumours in the Childhood Cancer Research Group at the University of Oxford, where I was the editor and principal author of Childhood Cancer in Britain: Incidence, Survival, Mortality (OUP 2007).
My work on retinoblastoma has included participation in national studies of incidence, treatment and survival during 1963-2002 and of non-ocular tumours in patients originally treated since 1951, and a report on supraregional referral of children with retinoblastoma, liver tumours and bone tumours. I am an editor of International Incidence of Childhood Cancer, Volume 3, which will include the latest information on retinoblastoma incidence worldwide. I bring to the SAC extensive experience of planning and carrying out epidemiological research on childhood cancer.