Participants Being Sought for Online Survey of Lupus Patients’ Blood Types

Participants Being Sought for Online Survey of Lupus Patients’ Blood Types

An ongoing online survey to examine the distribution of blood types among lupus patients could provide important information about why people develop the disease, researchers say.

The survey is a collaboration between the University of Wisconsin–Madison and the Scleroderma Education Project. The two groups have already conducted a similar survey among patients with scleroderma, an autoimmune, rheumatic condition that affects the body’s connective tissue.

To examine whether blood-type differences exist among autoimmune diseases, surveys are also being carried out on three other diseases: rheumatoid arthritis, psoriasis, and ankylosing spondylitis.

Both lupus and rheumatoid arthritis have features similar to scleroderma. To start with, patients with these conditions share certain symptoms and commonly have antinuclear antibodies, or ANAs. The antibodies target antigens in the nucleus of cells, causing organ and tissue damage. ANAs are often found in patients with autoimmune disorders, especially lupus.

In addition, both systemic lupus erythematosus and rheumatoid arthritis most often affect middle-aged women.

In contrast, psoriasis and ankylosing spondylitis patients usually have no antinuclear bodies, and ankylosing spondylitis is much more common in men than women.

The surveys ask patients only for their blood type and country of birth. Researchers hope to collect information on at least 1,000 patients in each survey.

Self-reported surveys carry a risk of inaccurate reporting and selection bias — that is, only a certain type of people participating. A lot of participants increases the chance the results will be valid.

In any case, the research team plans to subject the results to more rigorous research.

“Depending on the outcome of this initial pilot study, we will do a follow-on that uses actual patient records to eliminate the self-report issues and also allow us to examine additional data that may help to explain any observed results,” Ed Harris, founder and CEO of the Scleroderma Education Project, told Lupus News Today.

The scleroderma survey gathered 924 patient responses over six weeks in early 2017. Although the team is still analyzing the data, it soon became apparent that the participants’ blood types were not matching statistics of the general population.

“Because of the unexpected results in the SSc [scleroderma] survey, I decided to expand the scope of the study in order to determine if this unusual blood-type distribution pattern occurred in other similar autoimmune diseases, or was unique to SSc,” Harris said.

This information will give researchers an idea of how genetics contribute to the disease processes of both individual diseases and autoimmune diseases collectively.

Harris, a fellow in the Department of Medical Microbiology and Immunology at the University of Wisconsin-Madison, teamed up on the surveys with department Professor Miroslav Malkovsky.

“I am personally very interested to see how this initial study turns out, as it may ultimately help to increase our understanding of autoimmune diseases,” Harris said.

Patients with a formal lupus diagnosis are encouraged to participate in the survey. To avoid results that are difficult to interpret, the team is asking patients with a tentative diagnosis, such as undifferentiated connective tissue disease, or a lupus-scleroderma overlap condition, such as mixed connective tissue disorder, not to take part.

If you would like to participate, but are not sure about your blood type, ask your doctor: the information is usually available in medical records.

To participate, go to https://www.surveymonkey.com/r/8F57BC6.

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