Decisions about which research projects The Association should fund are made using a process known as peer review. ‘Peers' are researchers working in the same or related fields of research or who are using similar techniques but in different fields. The peer review process is tried and tested and accepted by the research community and research funding bodies as the best way of assessing projects.
The Association of Medical Research Charities (AMRC) has guidelines for best practice in peer review and independently assesses medical research charities on their peer review processes. The PSP Association has been independently assessed and awarded the AMRC Certificate of Best Practice in Medical and Health Research Peer Review. The AMRC certificate is the charity sector's kite mark for excellence in peer review.
Researchers seeking funding from The PSP Association must in the first instance submit an Outline application giving brief details of the proposed work. Outline applications are considered by the Medical Advisory Panel and a decision made as to whether the applicant(s) should be invited to submit a more detailed or Full application. If the proposed work is judged to be novel, interesting and of relevance to people with PSP, a Full application is normally invited.
Before a Full application is considered by the Medical Advisory Panel, it is reviewed and assessed by between two and four independent experts (scientists or clinicians with expertise in the appropriate fields) from across the world. Each expert referee is required to submit a written report on the proposed research identifying its strengths and weaknesses together with a recommendation as to whether, in their expert opinion, the research should be funded. The advice of the external referees plays an important part in assisting the Medical Advisory Panel to give full and proper consideration to each application and to reach a view as to whether or not The PSP Association should fund the proposed research.
The reason for seeking advice from independent experts who are outside membership of the Medical Advisory Panel is that the breadth of knowledge and expertise required to review in-depth the wide-ranging research subjects contained within proposals is far greater than can ever be encompassed within one learned group. The use of external independent experts also helps ensure fairness, objectivity and transparency in the consideration of research proposals for funding.
When the Medical Advisory Panel has considered a research proposal and taken a view as to whether or not it should be funded, its recommendation is put to the Board of Trustees together with supporting information (external referees' reports and written comments from MAP members). The Board of Trustees then makes a decision as to whether the charity will fund the work taking into consideration the availability of funds and competing interests.
The Medical Advisory Panel has no responsibility for decisions regarding the size of the research budget. This is set annually by the Board of Trustees which is responsible for the allocation of funds.
The Board of Trustees meets twice a year, in June and November. Applications for research funding are considered at these meetings. Applicants are normally informed in writing about the outcome of their research proposal within ten days of the Board of Trustees meeting.
Announcements advertising the availability of research grants from The PSP Association appear in the scientific and medical literature. Advertisements are also sent to leading universities and clinical research centres with the aim of drawing established researchers from related fields into the PSP research arena.
All applicants for research funding from The PSP Association, whether successful or unsuccessful, are sent copies of the expert referees' reports, in anonymised form to protect the identity of the reviewer, together with relevant feedback from the Medical Advisory Panel.
Where applicants have been successful in gaining funding from The PSP Association, the expert referees' reports and Panel members' feedback enables the researchers to make any necessary adjustments to the project to ensure its best possible outcome. That applicants take on board Panel members' and referees' comments is normally a condition of The PSP Association agreeing to fund the work. In the case of unsuccessful applicants, it is hoped that the referees' reports and feedback from the Medical Advisory Panel will help applicants to amend their projects where appropriate with a view to them applying for grants from other research funding bodies.
When a grant is awarded to a researcher it is subject to strict terms and conditions. This includes the researcher having to submit an annual report and a final report setting out the project's progress against the objectives as specified in the original research proposal. Any problems encountered and/or any proposed deviation in the work from that originally proposed must be identified. The Medical Advisory Panel evaluates the annual reports and subject to satisfactory progress will recommend that the Board of Trustees continues to fund the work. In the event that progress is unsatisfactory the Panel will advise the Board of Trustees accordingly and funding may be terminated. If a final report is not forthcoming, The PSP Association will withhold the last quarterly payment on the project - which can be a substantial amount of money.
Members of the Medical Advisory Panel and the many hundreds of external referees who review research proposals on behalf of The PSP Association are not paid for this work and give generously of their time. The PSP Association is indebted to all of these individuals without whom it could not fund research of the highest quality and of direct relevance to people with PSP.
As a charity The PSP Association receives no money from government and must raise all of its money for research and indeed for all its other important and much needed work through activities and public s. With this in mind it is inevitable that there will be many research projects assessed to be excellent science and of relevance to people with PSP but which the charity simply does not have the money to fund. This is a source of deep regret to the Association and a huge disappointment to people with PSP or CBD for whom research offers the only means to find an effective treatment and a cure.
Helping The PSP Association to raise more money for research will help people with PSP and CBD.
Learn more about what you can do to Help Fund Research.