The purpose of the MRC Call for Expression of Interest (EoI) is to gauge the likely interest in establishing a new cohort for research on intellectual disabilities. The EoIs solicited will inform discussion at a workshop to be held in the autumn and representatives from those submitting EoIs will be invited. The objective of the workshop will be to scope the feasibility and discuss the logistics of establishment and maintenance of a cohort in intellectual disabilities research in the light of the EoIs submitted.
The establishment of a cohort in this area would meet one of the recommendations of the Mental Health Review that was led by the MRC and published in 2010. The cohort would be a resource for high quality, hypothesis-driven research in an area where there is a perceived research gap. The final decision will be taken following the workshop and is dependent on establishing its feasibility. Funds have provisionally been set aside.
Remit of this call for EoIs
- At the moment MRC are seeking interest in establishing a cohort that would cover any condition or conditions that have arisen due to impairment of brain development before or during birth, or in the childhood years before the brain is fully developed; and which has been caused by any biological and/or environmental factors.
- The cohort will be established for epidemiological research on mental health and to provide information on risk factors and interventions. MRC also intends to explore the opportunity for designing the cohort to provide health care providers and care-givers with information that will inform the design of better care.
- The cohort should initially be established within the UK.
The rationale for considering establishing a cohort is as follows:
- The MRC-led review of mental health research noted the higher prevalence of psychiatric disorders and other co-morbidities among children with learning disabilities compared to children without learning disabilities; and the fact that those with more severe conditions are routinely excluded from patient and population based cohorts.
- There is a strong need to understand how certain factors such as mental and physical health relate to health outcomes in those with intellectual disabilities.
- From a scientific perspective, the study of rare and severe disorders can provide a unique insight into issues of much wider public health significance.
- Establishing a well-characterised cohort of people with intellectual disabilities will enable more immediate studies of the different aspects of the possible phenotypes and might also provide the epidemiological information to assist the establishment and optimisation of clinical and social management across the age range.
What your EoI should address
At this stage MRC are seeking information about you, what research questions you consider to be most pressing, the feasibility and logistics issues you envisage and how you would seek to overcome them. EoIs should provide the following information:
- Please provide the name of a single Principal Investigator, with host institution, who might lead a future bid and be administratively responsible for any award.
- Names and institutional affiliations of up to three co-workers.
- Please do not include CVs or any information that cannot be shared. Information on relevant funding and publications would be useful.
- Please indicate your consent for information from the EoI to be shared with delegates in order to inform the autumn workshop.
Note: MRC will consider proposals from any UK-based researcher who can demonstrate that they will direct the proposed research and be actively engaged in carrying it through. Researchers from overseas institutions may be included in a proposal as a collaborator where the nature of the research makes this necessary but it is anticipated that this cohort will be wholly UK-based at least at the start.
About the research question
It is important that EoIs make clear what new health research questions or hypotheses it will be possible to answer over the next five to ten years using the cohort resource. Therefore you should address the following
- A description of the most pressing research questions for the next 5 years listing the expected outcomes (maximum 2 sides of A4).
- What the proposed cohort will offer that other cohorts do not (nationally and internationally) and how it relates to other relevant cohorts?
Logistics and feasibility
As many of these syndromes are rare, undertaking research in this area presents very particular challenges such as recruiting large enough samples and the associated geographic spread of any cohort. Therefore you should address the following:
- What will be the target population (inclusion/exclusion)?
- What will be the starting age for cohort subjects?
- Who will be the comparison groups?
- What sample size do you envisage?
- Who would be the participating centres?
- What expertise do you have (or plans do you have to engage with specialists) in the area?
- What would be the plans for establishing the cohort as a resource – how is it/ will it be used by the wider research community?
- What questions do you think the workshop should address?
- What costs to the nearest million do you envisage the cohort costing, broken down into three or four major headings
- Initially, if funded, the cohort would be supported for five years. How would you manage continuation or discontinuation of the cohort beyond five years?
- How will the cohort be used to inform clinical decision making and inform policy or social care?
At this stage no details are needed on governance arrangements for data sharing and data access by the wider research community but please make you ensure that you are familiar with MRC policy on data sharing and preservation.
How to submit the EoI
There is no template or form and EoIs should be emailed, by 4pm Friday 8th June 2012, to: firstname.lastname@example.org
Do not exceed 6 sides of A4 (Arial 11 point) including references but you may append a 1 page diagram (e.g. Gantt chart/ flow chart).
Process and timescale following submission of EoIs
Following the workshop, the outcome will be reported to MRC Boards. If agreed, we hope that we will be able to invite proposals from competing consortia or commission a single group depending on how researchers agree amongst themselves to organise their response to any call. We anticipate that a call for funding will be issued in the spring of 2013.