What’s Happening In Research?
Different Immunologic Profiles are Associated with Distinct Clinical Phenotypes in Longitudinally Followed Systemic Lupus Erythematosus Patients
January 25, 2024 – To read the Abstract please visit https://pubmed.ncbi.nlm.nih.gov/38073017/
SAPHNELO Data: Remission Is An Achievable Goal
November 9, 2023 – SAPHNELO data shows patients are more likely to achieve and sustain remission in systemic lupus erythematosus compared to standard therapy alone.
For more information, please visit https://www.astrazeneca-us.com/media/press-releases/2023/saphnelo-data-show-patients-are-more-likely-to-achieve-and-sustain-remission-in-systemic-lupus-erythematosus-compared-to-standard-therapy-alone.html
Are you or someone you know affected by lupus?
Join us at Café Scientifique for a public discussion with researchers and physicians about SLE and cardiovascular disease research in Canada and more on Thursday, October 26th from 7:00 to 9:00 pm MT.
- SLE & Cardiovascular Disease
- How SLE patients access health information
- Expert Panel Discussion
- Ideas for Future Research
To register please visit https://www.eventbrite.ca/e/lupus-learn-tickets-708856608197?aff=oddtdtcreator
For more information, please contact Francesca Cardwell firstname.lastname@example.org
Lupus Mental Health Study Patient Survey Opportunity
There is an opportunity to participate in an online survey about the barriers to accessing mental health services in adults with Systemic Lupus Erythematosus (SLE). The purpose of this study is to better understand the challenges that people with SLE face when seeking mental health support. If you choose to participate, you will be asked to complete an online questionnaire that will take approximately 15 minutes to complete. The questions will ask about your experiences with mental health services and any challenges you may have faced when accessing them. Your responses will be confidential and anonymous, and only the research team will have access to them.
For more information on this survey please visit https://www.lupuscanada.org/wp-content/uploads/PatientSLEMentalHealthStudy-.pdf
A team of researchers from the University of Toronto are conducting research to help people with invisible disabilities, including lupus. In this survey, they are studying how people with invisible disabilities navigate the workforce.
If you are interested in taking part in this survey, they would greatly appreciate your participation. The only requirement to take part is that you have an invisible disability. To participate in the survey please follow the link below.
The survey will take you approximately 5 minutes to complete. Please feel to reach out to the primary researcher, Chloe Kovacheff (email@example.com), with any questions.
Determinants of Neuropsychiatric Flares in People with Lupus
In a new study, researchers explored predictors of neuropsychiatric (brain-related) flare activity in people with lupus being treated with active disease (without ongoing or severe neuropsychiatric involvement), and found an association between males, active or previous neuropsychiatric activity, and established organ damage. Neuropsychiatric lupus (NPSLE) is sometimes called central nervous system (CNS) lupus and affects the brain, spinal cord or other nerves in the body.
Researchers analyzed data from five Phase III lupus clinical trials. The male sex was strongly associated with NPSLE flare activity. Belimumab (Benlysta®) treatment at any dose or administration form did not offer any clear protection from flare occurrence and persons with lupus of Asian ethnicity were not associated with development of NPSLE flares.
Source: Lupus Foundation of America
To read more about the study please visit https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kead249/7179786?searchresult=1
Creating a clearer picture of lupus
UM clinician scientist Dr. Lily Lim is using artificial intelligence (AI) to better recognize lupus in patients. Known as “the disease with a thousand faces” symptoms vary from person to person. Lab tests aren’t always conclusive. The autoimmune disorder is infamously difficult to diagnose, leaving patients and medical providers confused. But Lim is working with AI to make the face of lupus more recognizable. Continue reading https://news.umanitoba.ca/creating-a-clearer-picture-of-lupus/
Supporting the wellbeing of Canadians with lupus: evidence-informed advocacy
The COVID-19 pandemic presents a natural experiment for researchers to discern how lupus patients access, use and trust advocacy organizations. A research team from Calgary, Waterloo, and global lupus clinicians and advocacy organizations undertook an (inter)national quantitative survey to investigate where individuals with lupus attain their health information to inform personal decision making in the face of a crisis such as the pandemic, what sources of information they find most useful, and those they trusted. These data indicate that advocacy organizations like Lupus Canada are less likely to be used and trusted than other sources of information. Lupus Canada will lead a team in the interpretation, dissemination, and translation of these quantitative survey results culminating in a deliberative dialogue to inform better/best practices in the context of evidence-informed advocacy. The objectives are to:
1. In partnership with Lupus Canada, develop lay language documents reporting the results of international surveys related to the sources of and trust in health information conducted by the team, with a particular emphasis on the Canadian data;
2. Engage a pan-Canadian sample of lupus patients through semi-structured qualitative interviews related to their views and interpretations of the lay language reports; and,
3. To undertake a deliberative dialogue with key stakeholders to distill the learnings from the qualitative and quantitative survey data into best practices with and for Lupus Canada in meeting the needs of their constituents.
The economic and social vulnerability of those with lupus was particularly challenged by the COVID-19 pandemic, given concern both about contracting COVID-19 as well as experiencing a lupus flare, often precipitated by stress and anxiety. Infections are a leading cause of mortality in lupus and these individuals may be at higher risk of severe COVID-19. For example, the controversy around repurposing hydroxychloroquine for the treatment and prevention of SARS-CoV-2 infection early in the pandemic led to difficulty accessing these drugs, and adverse physical and mental health outcomes in the SLE population were observed. These levels of uncertainty and anxiety have extended into the vaccination phase of pandemic response.
We intend that the practices and tools developed through this partnership will inform the effective dissemination of public health information for immunocompromised populations and ensure messages are delivered through channels that meet identified needs.
From Manchester to Toronto – Improving lupus ‘brain fog’
Lupus Canada proudly supports Dr. Barraclough and Dr. Touma’s study, Cognitive Dysfunction and Fatigue in Systemic Lupus Erythematosus, through our 2021 Catalyst Grant. To learn more about the grant recipients and their project please visit https://www.lupus.org/2021-recipients-of-the-lupus-canada-catalyst-award.
In early 2021, Dr. Michelle Barraclough, Research Associate for Manchester BRC’s Musculoskeletal theme, began a year-long research placement in Toronto to better understand ‘brain fog’ in lupus patients.
She shares her progress to date, and how this trans-Atlantic collaboration aims to improve care and treatments for patients. To read the full article please visit https://www.manchesterbrc.nihr.ac.uk/news-and-events/manchester-to-toronto-improving-lupus-brain-fog
Alexion Pharmaceuticals – Patient and Stakeholder Value Workshop
Alexion Pharmaceuticals, a global biopharmaceutical company focused on developing life-changing therapies for people living with rare disorders is inviting patients living with lupus nephritis or caregivers to participate in their Patient and Stakeholder Value Workshop. This workshop will be conducted as a series of four Zoom-facilitated sessions during April & May 2021. If interested please contact Stephanie Hamzo at Stephanie.Hamzo@alexion.com for more information.
Aurinia’s Voclosporin receives a priority new drug application review from the US Food and Drug Administration (FDA) for the treatment of Lupus Nephritis (LN)
Voclosporin is an immunosuppressant that blocks the IL-2 expression and T- cell-mediated immune responses in Lupus Nephritis. Voclosporin results in stabilizing the podocytes and reducing proteinuria. Clinical data from Phase II AURA-LV and Phase III AURORA have demonstrated significant improvements in renal function in LN patients, especially in Hispanic/Latino ethnicity patients.
AstraZeneca’s Anifrolumab demonstrated early and sustained reduction of disease activity in SLE patients in the Phase III Tulip clinical trial
The Phase III Tulip trial on Anifrolumab (a monoclonal antibody that blocks type 1 interferons) evaluated the efficacy and safety of anifrolumab in autoantibody-positive SLE who are receiving standard of care. Besides meeting the primary endpoint, the Tulip 2 trial provides encouraging results for the efficacy of Anifrolumab in moderately to severe SLE.
GSK’s Belinumab shows significant improvement in renal function in the largest Lupus Nephritis (LN) clinical study
In the most extensive study to date, GSK’s Belinumab (alongside Standard therapy) vs. placebo showed a significant improvement in LN renal response, such as renal filtration and urine protein creatinine. Moreover, Belinumab also demonstrated a favorable safety profile. The results were presented at the 2020 EULAR e-congress.
Promising clinical data from the clinical investigations of Eli Lilly’s Olumiant were highlighted at the 2020 EULAR e-congress
Olumiant (Baricitinib) is a JAK kinase inhibitor that is being investigated in SLE patients. It results from a Phase II clinical trial JAHH study, was presented at the 2020 EULAR e-congress. In the Phase II clinical trial, a 4mg dose of Baricitinib showed an improvement in SLE patients who weren’t responding to the standard care.
Canadian Rheumatology Association Improves Outcomes In SLE
This working group includes 23 adult and 4 pediatric rheumatologists, 1 immunologist, 4 general internal medicine and rheumatology trainees, and 1 representative from the Canadian Arthritis Patient Alliance. These recommendations are meant to help lupus healthcare providers in the evaluation of their patients, and help identify how and what to assess over time. These are the first lupus recommendations internationally to use a method called GRADE (Grading of Recommendations, Assessment, Development and Evaluation). This method carefully looks at the evidence behind each recommendation, and considers how it benefits or harms the patient, what resources would be required and if it is something that can be delivered equally to patients across the country. The working group looks forward to considering future recommendations in lupus treatments as a next step.
These recommendations confirm things that we already knew – that patients need to ensure their lupus healthcare provider is performing a thorough assessment per visit. In some cases, patients might notice over time that the practitioner is using a score to quantify this, which they can compare over time. The recommendations also help remind everyone how important heart health and the annual flu shot is. The recommendations do suggest that cervical cancer screening (aka PAP smears) should be done more frequently (eg. annually) rather than every 3 years as is stated in the Canadian guidelines for the general population. Pregnancy is definitely highlighted in these recommendations, with a strong recommendation to ensure a special set of antibodies called anti-Ro and anti-La have been done to evaluate the risk for a rare but important problem called neonatal lupus, where babies can have a serious problem known as congenital heart block. Close monitoring of women during the pregnancy period with coordinated care between physicians including obstetricians, maternal-fetal-medicine and other specialists and the lupus healthcare provider are encouraged.
Health Canada Approves First New Treatment For Lupus In Almost 50 Years
Health Canada’s recent approval of BENLYSTA™ marks the first new treatment available in almost 50 years to the over 1:1000 Canadian men, women and children who are living with Systemic Lupus Erythematosus (SLE) an autoimmune disease with no known cause or cure. Lupus most often affects women of child-bearing age (15-45) but can affect men, children and the elderly. Nine times more women than men will however be diagnosed with lupus.
“Lupus is a life-altering and life-threatening diagnosis” says Catherine Madden, Executive Director of Lupus Canada. “This incurable disease impacts and destroys many organs in the body and can cause constant pain, immobility, organ failure and even death. Lupus is seriously under-recognized and under-funded, but dedication to new therapies and new research fuels our hope for a cure. While Lupus Canada works towards a vision of life without lupus, we concentrate our efforts on ensuring people with lupus are living well. The approval of BENLYSTA™ means there is a new treatment option for Canadians living with lupus.”
Known as the “disease with 1000 faces”, because its symptoms vary so greatly from person to person, lupus affects over 1:1000 Canadian men, women and children, yet many people are still unaware of the disease. Because of the varied symptoms, lupus can be extremely difficult to diagnose. The symptoms of lupus often mimic other illnesses, and it can attack any tissue or organ in the body including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys and the brain. Common and often chronic symptoms of lupus include joint pain and inflammation, skin rashes, sun sensitivity, extreme fatigue, fever, chest pain and hair loss.
“As a child, I understood only that my father suffered from lupus – he couldn’t play ball, ride a bike or walk to the store… many days he was in too much pain to be able to get out of bed” says Kendra MacDonald, President, Board of Directors, Lupus Canada. “It was not only my father that suffered from lupus for over 20 years, our entire family was touched by the disease and the constant fear that the next complication would take his life which it ultimately did in 2001. The arrival of a new treatment helps to bring hope for other families like ours!”
Lupus Canada, working together with its provincial partners, is a national voluntary organization dedicated to improving the lives of people living with lupus through advocacy, education, public awareness, support and research. We provide educational and support resources for people whose lives are touched by lupus, raise awareness of Lupus and provide funding for research. Through the support of events such as Walk for Lupus and generous, engaged individual and corporate donors, we are able to continue our work on behalf of people living with lupus.
To learn more about lupus, Lupus Canada, our member organizations and divisions, visit our website or contact us at 1-800-661-1468. To learn more about BENLYSTA™, contact your doctor.