Lupus, SLE, or “systemic lupus erythematosus” is a disease that affects millions of people worldwide, a disease that strikes mostly women in all age groups including adolescents and young adults, a disease that can cause chronic or recurring symptoms from many different parts of the body, a disease that can be treated to some extent, but it cannot be cured – and yet it is a disease that most people do not know much about. That’s why as Editors of the journal Lupus Science & Medicine we are delighted that the Lupus Awareness Month initiative has been taken in the hope of gaining a greater understanding of lupus among the larger public.
Lupus Science & Medicine is a peer-reviewed, open-access medical-scientific publication, so it is one of many journals that exist to disseminate the results of medical research to the large community of researchers and health professionals. Lupus Science & Medicine was founded by the Lupus Foundation of America in recognition of the importance of having a platform for the rapid dissemination of important new scientific data from all the different fields of research having to do with this disease. For this reason, and in a partnership with the highly respected BMJ Publishing Group, the peer-reviewed open access model of publishing was chosen.
“Peer-reviewed” refers to the system whereby each contribution is reviewed by experts in that particular field, so as to ensure that the contributions are as factual and accurate as possible. This is a feature that Lupus Science & Medicine shares with the vast majority of medical scientific journals. The “open access” feature is somewhat more novel and different, in the sense that most journals originated at a time when you would get a printed version of the journal delivered by mail to those who subscribed, whether they be individuals or libraries. However, in this age most information is disseminated using digital technologies, and the “open-access” way of publishing takes that one step further: as is the case for Lupus Science & Medicine, there is no printed journal but everything is immediately available to anyone through the internet.
At Lupus Science & Medicine, we enthusiastically embraced this concept, and since the start of our journal, more than 100 manuscripts have been submitted for publication, of which we were able to accept almost half. The journal has gained in recognition, as is witnessed by the numbers of views and downloads, presence in the social media, and mentions. Most importantly, we are pleased that we have been able to publish very good quality research, studies that are expected to make a real difference in how patients with lupus will be treated in the future.
Here are some examples of how research published in Lupus Science & Medicine may change the prospects for patients with lupus in the future.
- Daniel Wallace and colleagues tested blood samples from patients with lupus and also from patients with fibromyalgia. Fibromyalgia is a different disease from lupus but some of the symptoms may be the same, so that it may be difficult for a physician to make the correct diagnosis. The study by Dr. Wallace showed that a novel blood test, analyzing the surface of the red blood cells, may help make that distinction. (Systemic lupus erythematosus and primary fibromyalgia can be distinguished by testing for cell-bound complement activation products Lupus Sci Med 2016;3:1 e000127 doi:10.1136/lupus-2015-000127)
- In the PROMISSE study, Dr. Yelnik and colleagues studies pregnant women with lupus or with the related anti-phospholipid antibody syndrome (a.k.a. Hughes’ syndrome) and determined that a blood test could most accurately identify those who were at risk of having an adverse pregnancy outcome – paving the way for therapeutic interventions to prevent such outcomes (Lupus anticoagulant is the main predictor of adverse pregnancy outcomes in aPL-positive patients: validation of PROMISSE study results Lupus Sci Med 2016;3:1 e000131 doi:10.1136/lupus-2015-000131).
- Cecilia Lourdudoss and colleagues analyzed the role that micronutrients (vitamins, minerals and such) might play in attenuating lupus activity. Contrary perhaps to expectations they did not find that vitamin D made a difference, but vitamin B6 and carotene did, underscoring how much more we still have to learn about the role that diet has in autoimmune diseases. For now, the best advice remains to eat a balanced, nutritious diet. (The association between diet and glucocorticoid treatment in patients with SLE. Lupus Sci Med 2016;3:1 e000135 doi:10.1136/lupus-2015-000135)
- The global reach of Lupus Science & Medicine was underscored by a publication from Thailand by Dr. Sirirat Anutrakulchai and colleagues. They performed a randomized trial of a coated-tablet form of the immunosuppressive medication mycophenolate-mofetyl (MMF) which was compared to an older, very well-established treatment, cyclophosphamide. The trial was done in patients with lupus whose kidneys were affected (lupus nephritis) and the results corroborated findings previously demonstrated in other populations, including in the United States, showing that the results with MMF can be at least as good as with cyclophosphamide, but with fewer side-effects. (A multicentre, randomised controlled study of enteric-coated mycophenolate sodium for the treatment of relapsed or resistant proliferative lupus nephritis: an Asian experience Lupus Sci Med 2016;3:1 e000120 doi:10.1136/lupus-2015-000120).
- But Lupus Science & Medicine does not only publish research. It also features editorials, commentaries, and other valuable contributions. Recently, Dr. Morton Scheinberg reflected back on how 40 years ago a new way of using corticosteroids was piloted at the National Institutes of Health and found to have major value in patients with the most severe, life-threatening forms of lupus. And indeed, ‘pulse’ corticosteroids are still used today. (The history of pulse therapy in lupus nephritis (1976–2016) Lupus Sci Med 2016;3:1 e000149 doi:10.1136/lupus-2016-000149)
In summary, over its short existence to date Lupus Science & Medicine has already become an important source of relevant, timely and high quality scientific data having a bearing on lupus. As such, we are looking forward to seeing ever increasing gains in our ability to help patients with this disease, and work towards a cure. For the time being, we believe the dissemination of information is an important task, in part through peer-reviewed and open access publishing as is done in Lupus Science & Medicine, and in part through valuable and exciting initiatives such as the Lupus Awareness Month.
Ronald F. van Vollenhoven
Professor of Rheumatology
Amsterdam Rheumatology and Immunology Center ARC
Amsterdam, The Netherlands