Progress so far
One of our key aims is to support research into antiphospholipid syndrome (APS) and we have committed over £540,000 to-date into research we believe will have a real impact on the APS community
We do not receive funding from the government or other public bodies, and rely purely on public donations - needless to say, we need your support to continue this work.
APS Research Fund Awards 2020
The following research grants were awarded in 2020:
- Dr Deepa Jayakody Arachchillage from Imperial College London was awarded a grant to work on the project: 'Fibrinolysis in thrombotic APS'.
- Dr Jennifer Tamblyn from the Institute of Metabolism and Systems Research at the University of Birmingham was awarded a grant to work on the project: ‘ApS StratIfication STudy - ASSIST’. The aim of this study is to improve pre-conception prognostic risk stratification for women diagnosed with antiphospholipid syndrome (APS) following recurrent pregnancy loss (RPL). The study will generate the pilot data required to support a large multi-centre prospective APS risk stratification study using the Tommy’s National RPL Network.
The Louise Gergel Fellowship, our memorial fundraising sub-committee have also awarded the Louise Gergel Prize of £5000 to help further Dr Tamblyn's important research into APS and pregnancy.
- Dr Thomas McDonnell from University College London was awarded a grant to work on the project: ‘The Role of Monocytes in APS: Does Phenotyping Hold The Key?’
- Dr Maria Efthymiou from the Haemastasis Research Unit at University College London was awarded a grant to work on the project: 'Development of a shear stress-based model assay termed ‘in vitro thrombosis model’ integrating platelets, the coagulation system, and the endothelium for the assessment of thrombus formation in APS'.
APS Research Fund Awards 2019
The following research grants, travel awards and bursaries were awarded in 2019:
- Dr Thomas McDonnell from University College London was awarded a grant to work on the project: ‘The structure and function of Beta-2-Glycoprotein I: why do we get APS and how does it work?’ Dr McDonnell was also awarded a fellowship in 2019 by the Medical Research Council to further study B2GPI for the next three years.
- Dr Doruk Erkan, one of the Founding Members of APS ACTION, the international group for collaborative research into APS, was awarded a grant to work on the project: ‘A lupus anticoagulant testing protocol for anticoagulated patients’.
- Dr Maria Efthymiou from University College London was awarded a travel grant to the International Society on Thrombosis and Haemostasis (ISTH) in Melbourne in 2019. One of Dr Efthymiou’s abstracts was a top poster winner in the APS session at this international meeting.
- Dr Maria Efthymiou from University College London was awarded a bursary by our memorial fundraising sub-committee, the Louise Gergel Fellowship for her research paper at the International Society on Thrombosis and Haemostasis (ISTH) in Melbourne. The paper looked at the comparison of Local and Core Laboratory Lupus Anticoagulant Results from the APS ACTION Database/Repository.
- Dr Mynhi Dang from Imperial College was awarded a bursary at the International APS Congress 2019 held in Manchester, UK for her poster about Plasma Von Willebrand Factor (VWF) and ADAMTS13 profiles in antiphospholipid syndrome and lupus.
Dr Dang has kindly provided the following update to their study:
In our study, conducted jointly at Imperial College London and University College London, we looked at two important blood proteins that are naturally produced in our bodies called Von Willebrand factor (VWF) and ADAMTS13. The balance of these two proteins in the blood are important for the formation of a normal blood clot in response to injury.
When levels of these proteins are changed, with lots of VWF and less ADAMTS13, you are more likely to form a serious blood clot even without injury. In our ongoing study, we looked into measuring the different levels of VWF and ADAMTS13 proteins in patients with antiphospholipid syndrome. Interestingly, we found that the levels of VWF and ADAMTS13 are imbalanced in patients with antiphospholipid syndrome, and that up to 20% of patients also carry a specific antibody against ADAMTS13 that may stop it performing its role. Our results provide interesting new insights into why patients may have a greater propensity to develop clots in the blood and have miscarriages.
We hope that our findings will be able to help future researchers in the development of new drugs for patients with antiphospholipid syndrome. For example, whilst drugs which target VWF are currently in development for other diseases, they may one day also be helpful in treating patients with antiphospholipid syndrome.
Research Funding 2001-2018
Since the charity was founded in 2001, we have funded the following people and projects:
- an APS research doctor at St Thomas’ Hospital for three years – this led to the important discovery that APS can cause spontaneous bone fractures in some patients
- an APS research fellow at St Thomas’ Hospital for ten years – this role focussed on several lines of research including the role of monocytes in APS and assessing the risk of developing the clinical manifestations of APS. The funding for this research fellow was raised by our memorial fundraising sub-committee, the Louise Gergel Fellowship
- APS and cognitive function – this project found that people who have thrombotic APS are twice as likely to experience memory and thinking problems compared to those with obstetric APS
- APS and fatigue – this project investigated the impact of fatigue and physical inactivity in patients with APS
- In 2016, together with the Louise Gergel Fellowship, we awarded Young Scholar Awards to Lucas van den Hoogen and Cecile Marie Yelnik at the International Congress on Antiphospholipid Antibodies held in Cyprus
- APS and autophagy – this University College London project was jointly funded by LUPUS UK and the Louise Gergel Fellowship and looked at whether a malfunction in autophagy leads the immune system to attack the body and cause symptoms of APSResearch Funding 2001-2018
In addition to funding projects and researchers, we facilitate APS research by providing access to our patient group, recruiting patients for trials, helping to draft questionnaires and disseminating surveys.
This type of collaboration has assisted in the publication of a number of studies including:
- Patients’ experience of a diagnosis of APS
- Antiphospholipid syndrome: description of population and health-related quality of life
- Rivaroxaban in APS study
- Exercise Participation in People with Antiphospholipid Syndrome: Associations with Exercise Self-Efficacy and Illness Perception
- Going viral in rheumatology: using social media to show that mechanistic research is relevant to patients with lupus and antiphospholipid syndrome
In the last few years we have also provided letters of support to over twenty researchers applying for external grant funding, and even played a role in securing the largest grant ever awarded in the UK for research into APS.
In 2017, the Medical Research Council awarded a £3.5million grant to the Centre for Rheumatology at University College London to continue developing a new treatment for APS. Professor Anisur Rahman, now Vice-Chair and a Medical Advisor for APS Support UK, was leading the team at UCL and said:
“The involvement of APS Support UK was really important in helping us to get this research grant. The MRC, like other grant-giving bodies, is keen that researchers should involve patient groups in planning projects. It is important for us to hear what patients feel about the research we are doing and how it might benefit people with APS. This charity provides essential patient input for researchers”.
If you wish to donate specifically for research, please click here and your donation will be restricted for research purposes only.