MONITORING OUR RESEARCH

It is essential that we regularly monitor the progress and outcomes of the research we fund and can show how it is helping to facilitate our vision of a future where the effects of A-T are minimised. It is important that we inform our donors how money they have donated is being spent as we rely heavily on their generous support. The following methods are used to monitor our research projects on a regular basis

Annual reporting

Every year, the researchers we are funding are asked to provide updates on their progress.  They explain how they are contributing to advances in A-T, what knowledge they have gained and if they were able to answer the key questions that they set out to.  We do this to monitor how work is progressing, if it is going according to the original plan, or if there have been changes in goals.

We know that research can take a long time and it can take many years to translate the knowledge gained into a positive change to patient lives.  Some projects will deliver important insights and developments and others will not deliver the results that we hoped for.  In either circumstance, it is essential to understand how the research we fund has progressed so that we and the wider A-T research community can learn and make future progress.

Our scientific advisor reads all the reports to monitor the progress of each project, and makes recommendations where required.

Our fundraising team also uses these reports to write a summary for donors who are supporting the research.

Final reports

We ask all researchers for a final report on the outcome of their project within 3 months of the end of the project.  This is a summary of the completed research project, what work was undertaken, which aims were achieved, what the implications of any new knowledge could be and where the research is going next.  We provide an update on all completed projects on our website.

Any outstanding payments are settled in full after the final reports have been signed off.

Additional monitoring

We often visit grant holders to meet researchers in person or virtually to hear about their progress and understand if we can contribute in any other way. We also arrange regular scientific meetings with the A-T alliance where global research efforts and projects are discussed.

We attend various other conferences and are always keen to collaborate with other A-T organisations and talk to researchers about their work.