We raise awareness and tackle issues with key decision makers and stakeholders
Animals in research
Fight for Sight like all AMRC charities endorse the 3R’s principle to “replace” the use of live animals unless absolutely necessary, “reduce” the number of live animals used in research and “refine” procedures to make the use of animals in research as humane as possible.
As a member of the Association of Medical Research Charities (AMRC) Fight for Sight supports the use of animals in research if there is no viable alternative. We actively review this position, mindful that new technologies aim to develop alternatives to reduce and eventually replace animal models. Currently, we think the use of animals is a necessary part of the research process to advance our understanding of disease and aid in the development of new treatments for eye conditions.
Fight for Sight’s terms and conditions states that researchers must adopt best practice in the use of animals in research, and as such we support the ARRIVE (Animal Research: Reporting of In Vivo Experiments) guidelines which are intended to improve the reporting of the use of animals in medical research.
Bio-banking is both the storing and making available of biological samples for use in research. This has been the single most important change in recent times to support research into human diseases, including eye conditions.
The UK Bio-bank is a collaboration between the Wellcome Trust, MRC, British Heart Foundation and the Scottish Government. It recruited 500,000 people for biological samples aged 40-69 in 2006-2010. Eye research has been specifically boosted by the collection of 100,000 eye measures (such as retinal photographs) as part of the UK Bio-bank.
Fight for Sight acknowledges that the UK Bio-bank is an important resource for eye researchers to better understand eye conditions. Fight for Sight welcomed the announcement that all 500,000 people in the UK Bio-bank will have their DNA sequenced. This will help provide an even richer data source for researchers to better understand the contribution of genetics, environment and lifestyle in disease development.
Charity Research Support Fund
The Charity Research Support Fund (CRSF) is a block grant to universities. In England, it has been allocated by Research England, under UK Research and Innovation (UKRI), as part of the QR (quality-related) funding it awards to universities since April 2018. Its purpose is to fund the indirect costs of research such as utilities and overheads. This makes the best use of supporter donations as they go to funding the direct costs of medical research. The 3 other national higher education funding bodies each administer a charity support element as part of the QR funding they administer to universities.
Fight for Sight acknowledges that the CRSF is vital to ensure that we can fund innovative sight saving research. The CRSF was increased in 2018 to £204 million. This is the first increase in the CRSF since it was fixed at £198 million in 2010.
Fight for Sight welcomed this increase in the CRSF and we would like to see the CRSF rise year on year in line with inflation.
Clinical trials are research studies involving patients, which compare a new or different type of therapy or intervention against currently available treatments, or look at ways to prevent illnesses e.g. through testing a new vaccine.
New drugs or treatments currently must go through clinical trials to fully understand the risks and benefits of a new approach. Trials aim to test the safety and clinical effectiveness of new therapeutics or interventions for patients. A new treatment is not always better, and trials are therefore very important to find out whether one treatment is safer and more effective than another, or if it is just as good.
Fight for Sight fully acknowledges the vital role of clinical trials in bringing new treatments to patients in our fight against sight loss. We provide some funding for small clinical trials via grant funding schemes to improve the evidence base for therapeutic approaches.
Gene therapy is providing a growing focus in the environment of eye research. It is an exciting area of new science with the potential to benefit people living with sight loss. The nature of this research aims to provide treatments to correct or replace gene abnormalities.
Inherited genetic conditions that lead to sight loss, currently have no treatments available, but early indications of gene therapy highlight the potential to halt the progression and possibly improve sight for people with inherited eye diseases. As with other new areas of research, its potential needs to be balanced with adequate safeguards.
Fight for Sight supports the funding of research to increase knowledge and development of gene therapy, as well as expanding the expertise required to deliver such treatments and after-care.
Open Access research
Open Access is the process of making research freely and widely available in academic journals. Fight for Sight believes that research being open access maximises the impact of research and benefits the wider research community as well as patients.
There are two routes to making research open access:
- Green Access - The final peer reviewed article is deposited in an electronic depository. Access to the research output can be granted either immediately or after an embargo period
- Gold Access – The final peer reviewed article is published in a way that allows immediate access to everyone free of charge.
We support and encourage researchers to make their research open access. Fight for Sight’s grant terms and conditions allow researchers to apply for open access and dissemination costs within their grant application.
Patient data in research
The use of NHS data has a number of benefits for research. It can help researchers better understand the causes of disease, improve diagnosis and help develop new treatments and a better understanding of prevention. This is important for people living with sight loss as for many conditions we do not know enough about what causes them and how to treat them effectively.
We recognise however, that despite safeguards and measures of confidentiality that not everyone would like their data to be used for research purposes and that there are concerns about trust and confidence about how their information is collected, stored and shared.
It is essential that the public and patients are able to make informed choices about sharing their personal health information. Fight for Sight supported the introduction of the national patient data opt-out in 2018 for patients to opt-out of their identifiable NHS data being used outside of their direct healthcare if they so wish.
Stem cell research
Sight loss occurs when one or more components of the eye are damaged or stop working properly. Stem cells may be of use to replace the damaged cells in the eye.
While we recognise that there are alternative perspectives on stem cell based research Fight for Sight believes that this area has the potential to transform the way in which we respond to sight loss – providing treatments for many of today’s incurable eye diseases and conditions.
Stem cell research and therapy is subject to strict regulation through the Human Fertilisation and Embryo Authority (HFEA) and within this framework of regulation Fight for Sight supports research projects that involve the use of embryonic, non-embryonic (adult) and animal stem cells. We do not and would not support unregulated use and marketing of unproven stem cell treatments.
Fight for Sight believes that continued research into the use and potential of stem cells is essential to enhance our knowledge and understanding and take us closer to ending sight loss.
Working with industry
Fight for Sight is committed to sound ethical collaboration with commercial and corporate partners in the interest of people affected by sight loss and blindness. We receive support from a range of companies including pharmaceutical and medical devices companies, as part of a diverse fundraising strategy.
We recognise the importance of working with all stakeholders to ensure we do our best to meet the needs of our beneficiaries and their families. However, the views of the charity are always reached independently and are based on informed and balanced evidence, ensuring that these companies do not impact or influence our strategic direction.
This policy provides clear guidance about how Fight for Sight works with pharmaceutical and medical devices companies, and follows the code of fundraising practices as detailed by the Institute of Fundraising.
- Under no circumstances will companies influence the charity’s strategy, policy, activities or actions either explicitly or implicitly.
- Every charity and industry collaboration will be assessed and agreed on an individual basis according to the charity’s internal corporate policy.
- The charity recognises that pharmaceutical and medical devices company partners must follow The Association of the British Pharmaceutical Industry (ABPI) Code of Practice. The charity is aware of these guidelines and will ensure that both parties in any agreement work to fulfil these obligations.
- As a member of the AMRC, the charity will apply working with industry principles in line with the AMRC recommendations of independence, integrity and transparency, outlined in AMRC (2014) An Essential Partnership: A guide for charities working with industry.
- In accordance with the principles of the Data Protection Act 1998, the charity will not, under any circumstances, disclose any confidential information regarding its supporters to any companies.
- The charity is committed to being open about our Trustees’ and Senior Management Team’s relationship with companies. The charity maintains a Register of Interests and Trustees and Senior Management Team are required to declare any interests they hold in external companies. The Register of Interests is held in order to identify and manage any potential conflicts of interest.
- The charity will make public all partnerships with the pharmaceutical and medical devices companies through our website.
- Income from pharmaceutical and medical devices companies will be clearly disclosed in our Annual Report.
- A written agreement is drawn up at the beginning of each new partnership with any company and each partnership will be monitored and evaluated.
- The charity will be open and honest in response to any public or media enquiry concerning relationships with corporate partners.
For more information, please contact Fight for Sight’s Corporate Partnerships Manager on 020 7264 3900.