Wednesday, 5 April 2017

Give your views on future research

We have been asked to circulate the following explanation and link to an online questionnaire by the research team at University College London. 

It’s slightly technical, but we would really appreciate it if you could take a few minutes to complete the brief online survey so that they can learn about the type of research that is important to you.

How you can help influence a new research proposal
We are researchers at University College London studying patients with lupus and antiphospholipid syndrome (APS) to increase our understanding of what causes these diseases and so improve their treatment. We have a new and exciting idea that we believe could improve patient care and would like to get your thoughts on how important and relevant it is to patients before we apply for research funding to study it.

We are interested in how certain parts of the immune system (antibodies) interact with blood clotting (coagulation) and inflammatory (complement) pathways to cause disease.

Antibodies are proteins that normally bind to foreign substances, such as infections, and clear them from the body. In autoimmune conditions such as lupus and APS, the immune system becomes scrambled and produces (auto) antibodies which bind to the body’s own cells causing damage. 

We are very interested in one particular autoantibody that binds to an enzyme called activated Factor (F)Xa. This enzyme is an important part of the coagulation pathway that becomes activated after injury to stop bleeding. It is also the target of new blood thinning drugs that work by inhibiting FXa activity in patients with excessive blood clots, such as rivaroxaban. FXa is also known to cause inflammation and recent evidence has shown that it may occur through activation of complement proteins. These proteins usually help the body to fight infection, but they are also known to be important in lupus and APS. 

No one has studied whether anti-FXa antibodies alter FXa and complement activation in SLE and APS. We think that being able to identify anti-FXa antibodies and knowing how they interact with FXa and complement to cause disease would allow us to tailor treatments for patients according to their blood results. So patients positive for these autoantibodies may be suitable for treatment with anti-FXa drugs because of their ability to block FXa induced complement activation, even in the absence of a blood clot. Therefore, greater knowledge of how these antibodies affect FXa and complement would help us understand the benefits of this treatment. We also hope to develop new drugs to target these diseases. 

However, before we apply for this research we’d like to ask you some simple questions to check we are looking to answer the questions that are most relevant to you. Please click on the link below to answer these questions:

All of us at the UCL APS research group would like to extend a grateful thank you for your time and support in answering these questions, it’s only together we can really make progress in treating these diseases.

Tuesday, 7 March 2017

Largest grant ever awarded for APS research in the UK

The Centre for Rheumatology at University College London has been awarded a £3.5 million grant from the Medical Research Council to continue developing a new treatment for antiphospholipid syndrome (APS) the largest grant ever awarded in the UK for research into APS. The grant will support the next three years' work on the project designed to develop the new agent to the point where trials in humans could start. 

The current treatment for patients with APS involves lifelong anticoagulant treatment, with drugs such as warfarin, but these are associated with a significant risk of bleeding. The new treatment being developed by UCL looks at suppressing the antibodies so that anticoagulation could be reduced for patients. 

 Professor Anisur Rahman, a Trustee and Medical Advisor to APS Support UK, is leading the team at UCL who are working in partnership with Abzena, a biotechnology company that provides specialist chemical technology needed to develop this potential treatment. 

 Professor Rahman said: “This collaboration has been a team effort for the last decade. Working with an industrial partner has been a key feature of the project as both the academic and industry partners provided complementary expertise and looked at the project from different viewpoints. In addition, we have a good relationship with patient groups particularly APS Support UK so we can obtain a good idea of what patients need from new therapies in this syndrome.” 

Needless to say, our charity is delighted that such a large grant has been awarded to further the research of APS. Our CEO, Lynne Kirwin, explained: “We welcome the award of this grant to this valuable research initiative. We have had the opportunity to work closely with UCL research team in recent years, providing feedback from patients on the therapies currently available for APS. 

“The possibility of a new treatment will undoubtedly give hope to patients and will be warmly welcomed by clinicians working in the field.” 

For more information, please read the UCL press release.

Tuesday, 14 February 2017

Antiphospholipid antibodies disappearance in primary antiphospholipid syndrome

Research has been published looking at the controversy over negative antiphospholipid antibody results in people who have been diagnosed with primary APS at an earlier stage.

The authors of this paper looked at patients who had clearly been positive for the blood tests and had a diagnosis of APS, but whose subsequent tests had been negative.

The study suggest that, in primary APS, persistent negative antiphospholipid antibody profile is not an indication to interrupt oral anticoagulant therapy. 

Friday, 10 February 2017

Festival volunteering opportunity

Thank you to the two anonymous (so far) people who nominated APS Support UK as their chosen charity when they volunteered with My Cause UK at the Boomtown Fair last summer, earning us a donation of £100.

My Cause provides unique volunteering opportunities at music festivals and events across the UK, allowing volunteers to raise funds for any charity they choose in return for their time and effort. In return for the time that a volunteer gives them, they make a donation on their behalf to their chosen charity.

So, if you're a festival go-oer and want to get involved, please have a look at their website:

Friday, 3 February 2017

APS Specialists Directory

Thanks to all the patients who have recommended their APS doctors to us and allowed us to produce the UK Specialists Directory. 

We have maintained this unique directory for over four years now and, thanks to information sharing, it has helped many APS patients finally see a doctor who understands their condition.

We have just added over eight new doctors this year alone and now have a list of almost 130 throughout the UK.

Please do let us know if your APS specialist is missing from the list and thanks again for making this possible.…/specialists-in-your-area.php

Tuesday, 31 January 2017

PREGNANTS working group releases results of large study

The PREGNANTS working group, (PREGNancy in women with ANTiphospholipid Syndrome), has just released the results of a large study.

The trial investigated 750 pregnancies in women with primary APS looking at the outcomes associated with the different types of antibodies - Lupus anticoagulant (LA), anticardiolipin (aCL) and the anti-beta-glycoprotein1 (ab2GPI).

They found that aCL is the most common antiphospholipid antibody present, but ab2GPI is the one associated with the lowest livebirth rate and highest incidence of pre-eclampsia, low weight babies and stillbirth, compared to presence of aCL or LA alone.

This pivotal study will help guide research in the future, thanks to all those women who took part.

Friday, 23 September 2016

Christmas cards now on sale

Our 2016 Christmas cards are now on sale from our website

We have lots of designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity.

Thank you if you are able to support us this way.