As many of you know, last Spring I conducted a survey looking at blood type distributions in patients with systemic scleroderma. We managed to get 924 responses and the results were clearly different from the overall population. If this finding is unique to scleroderma, it could give us better insight into why some people are more likely to get this rare disease.
In order to figure out if scleroderma is the only disease with this unexpected blood type distribution, we decided to do a formal, follow-on study through the University of Wisconsin in Madison, where I am a Fellow in the Dept. of Medicine. The new study extends the identical, anonymous two-question survey to four other autoimmune diseases:
- Rheumatoid Arthritis
- Ankylosing Spondylitis
This is an official UW study that has been review by the UW Institutional Review Board. Here is a link to a document that describes the overall study in more detail: http://sclerodermainfo.org/pdf/Blood-Type-Survey-Details.pdf.
The new study requires a minimum of 1000 responses per disease. This large number is to help overcome the inherent concerns about self-report surveys. We have now completed and closed the Rheumatoid Arthritis and Lupus surveys. The Psoriasis and Ankylosing Spondylitis surveys are still open. However, we already have more than 1000 responses in the AS survey and that survey will close at the end of October.
The problem is the Psoriasis survey. Psoriasis affects about 2% of the population world-wide but differs by country. Because of that, I expected that this would be the easiest survey to complete but in reality, for reasons that I don’t fully understand, it has been one of the hardest. Part of this may be from the fact that people with psoriatic arthritis are excluded from the survey, but that is only about 20% of people with psoriasis.
So here is how you can help. There is a very good chance that you know one or more people who have psoriasis. They may or may not know their blood type, of course, and that is a requirement to take the survey. Could you please contact anyone you know who has psoriasis and ask them to take the survey if they know (or can find out) their blood type? Here is a direct link to the Psoriasis survey:
Psoriasis Survey: https://www.surveymonkey.com/r/5LBBMQL
However, to make it easier, if you send someone to the Scleroderma Education Project website at SclerodermaInfo.org, there is a link to the surveys at the top of the page.
Once the last survey is closed, I will finally be able to post preliminary results of the scleroderma and other surveys here. Right now, I am “blinded”, meaning I don’t know how any of the surveys are going, and I am very interested in seeing what the results are. If they are interesting enough, we will get funding and do a follow-on study using patient records and looking at other variables including gender.
By the way, the Ankylosing Spondylitis survey is still open, so if you know anyone with AS, here is the link to that survey (it is also available through the Scleroderma Education Project home page link):
Ankylosing Spondylitis Survey: https://www.surveymonkey.com/r/DWHVWXZ
Please help. The quicker we can close the last survey, the sooner you will see the results of all of the surveys and how they compare to the scleroderma survey.