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Antiphospholipid syndrome & stroke research: Can you help?

The Centres for Haematology & Rheumatology at University College London Hospital are desperately seeking support to pay for the drug
rivaroxaban (an anticoagulant “blood thinner”) for patients in the RISAPS (RIvaroxaban in Stroke Patients with AntiPhospholipid Syndrome) trial (ISRCTN number 10280992).

The current treatment to prevent recurrent blood clots in APS patients who suffer from stroke, or related types of blood clots in the brain, is warfarin. Warfarin is an effective drug but very hard on patients as it interacts with food, alcohol, & other drugs, resulting in variable blood thinning effects. This necessitates regular (often weekly) monitoring “INR” (International Normalised Ratio) blood tests to try to avoid the blood being too “thick” or too “thin”, potentially leading to recurrent blood clots or bleeding, respectively. 

In the RISAPS trial, which has been approved & funded by a leading UK charity, we will compare patients on high intensity warfarin  versus high intensity rivaroxaban, which, unlike warfarin, is fixed dose with more predictable anticoagulant effect & no interactions with food or alcohol, & fewer interactions with other drugs. The RISAPS trial is therefore of fundamental importance as it could improve the medical care of individuals with APS. 

Most unfortunately the Covid 19 pandemic struck just as we were about to start the trial. Like all drugs, rivaroxaban has a 'shelf life' and much of the stock we bought can no longer be used, so we need to find £100,000 to replenish the stock for the trial.

The importance of the RISAPS trial was highlighted in two recent international guidance documents (from the International Society of Thrombosis and Haemostasis (ISTH) and International Congress on Antiphospholipid Antibodies Task Force Recommendations on APS Treatment Trends). These were based on consensus between key international opinion leaders in the management of APS. The guidance has taken into account the European Medicines Agency’s advice against the use of direct oral anticoagulants (DOACs), which include rivaroxaban. Both these guidance documents recommend against the use of the currently licensed doses of standard-intensity DOACs in APS associated with blood clots in arteries, such as strokes. Both guidance documents also recommend that the potential use of DOACs in APS requires further, appropriately designed studies, and cite the RISAPS trial as an example.

In RISAPS, we are using a high-intensity dose of rivaroxaban, to “match” the currently used “high-intensity” warfarin with which we treat our APS patients with stroke. We are also not inviting individuals who have triple positive antiphospholipid antibodies (i.e., lupus anticoagulant, anticardiolipin and anti-beta 2 glycoprotein I antibodies) to participate in the trial. APS patients with triple positive antiphospholipid antibodies may be allowed in the study, in due course, only if the Independent Data Monitoring Committee confirms that it is safe for this group to take part in RISAPS and receive a high dose of rivaroxaban.

We need to raise the funds as quickly as possible & any contribution – big or small – would be incredibly helpful. If you can help, please do send whatever you can afford to The Rheumatology Discretionary Fund, UCL Charity, Charity Registration Number 1007335. 

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Thank you!