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How we fund UK clinical research

When Reverse Rett was first established, we did not have the resources or experience to evaluate research applications ourselves. Our goal was and still is to build a concerted effort to accelerate treatments and a cure for Rett, by working in partnership with the US based, Rett Syndrome Research Trust (RSRT).

Research funded by Reverse Rett, via RSRT is evaluated and managed through their own external peer review process with support from their Scientific Advisory Board.

Many countries, including the UK, have a very poor medical infrastructure for the treatment of rare diseases and very poor communication within the medical community of best available medical practice. In the last few years Reverse Rett has been trying to address this weakness by facilitating collaboration within the Rett medical community and by supporting doctors who are doing research into clinical treatments and running progressive clinics for Rett Syndrome

Within the UK, we have a unique set of challenges re the medical infrastructure for the treatment of rare diseases, including Rett Syndrome and very poor communication within the medical community of available medical best practice.

Reverse Rett is working to address this weakness by facilitating collaboration within the Rett medical community and by supporting doctors who are doing research into clinical treatments and running progressive clinics for Rett Syndrome.

It is this area, which is a focus for our work outside the jointly funded projects we fund in collaboration with RSRT.

 

GRANT APPLICATIONS

Reverse Rett will not have regular calls for proposals. Nor will it consider unsolicited applications for research grants

 

OUR RESEARCH SELECTION PROCESS

If Reverse Rett becomes aware of ground breaking clinical development work, if the proposed research is within the charitable remit of Reverse Rett, the clinicians may be invited to submit a research grant application for funding support from us where we think funding from Reverse Rett is crucial to allowing the work to continue

The proposal would then be sent to three to five independent outside experts who will provide a written peer review of the proposed work.

The written reviews of the external peer reviewers will be sent to the members of the Reverse Rett Research Review Committee. Members of this committee have volunteered their time to make an objective, independent assessment of the proposal being considered. (See their Terms of Reference in the next section) They will then make a recommendation to the Board of Trustees of Reverse Rett.

The Board of Reverse Rett will then take the final decision, based on the recommendations of the Research Review Committee, to funding the proposal or not.

Applicants are given the chance to read and respond to the external scientific peer reviewers’ comments and all of this information – application, external reviewers’ reports and applicant’s response is given to our Research Review Committee (RRC) for consideration and assessment.

Grants will be reviewed and awarded within a period of 4 months.

 

RESEARCH EVALUATION

Funded projects are appraised on a regular basis throughout and the evaluations will be published in our annual reports. When research is conducted in the UK, our Research Review Committee will visit the research site where possible. The impact of the research we fund will be measured in terms of achievement against original research goals; publication of key research findings and review by peers at the end of a grant funding period. Evaluating our research will help us continually improve as a charity.

 

CORE PRINCIPLES

Research we fund relies on the generous support of all our fundraisers – the public and the family and friends of those affected by Rett Syndrome who commit their time and efforts to raise vital funds for us to invest in research. We take the responsibility of spending those funds very seriously and work to three core principles:

 

  • PEER REVIEW – all our research applications are subject to peer review as outlined above. Peer review is an integral part of our decision making process enabling us to fund high quality researchers and projects which will have a clear clinical impact.
  • CONFLICTS OF INTEREST –Reverse Rett make every effort to ensure that its decisions are fair, objective and transparent. We have a strict conflict of interest policy for external reviews, internal reviews and our Board of Trustees.
  • WORKING TOGETHER – Working with others is a key part of our strategy. We believe that collaboration and partnership is fundamental. By sharing resources, knowledge and experience we can accelerate the pace of research, save time and money.