Frequently asked questions (FAQ's)
What you can expect?
- Information on your status regarding the levels of IL-1a aAb in the samples you submit.
- Information on the presumed ability of the test to predict the outcome of your disease. This information will be emailed within a month from the time we receive your plasma sample.
- Information by batch email each time significant new knowledge on IL-1a aAb in rheumatic diseases becomes available, arriving from this investigation or from the scientific community. Such information will also be posted on this Web site.
- Information if / when the test can be approved as a clinical test and under which conditions the test may be used in the future.
- Confidentiality. For sample identification purposes, we require only patient initials and date-of-
birth plus date of sampling. Feed-back is by email only - for your privacy, this email address may be to your physician or rheumatologist, or any other of your choice.
We will not distribute your sample identification to anyone outside our institution.
What you cannot expect?
- We regret that we cannot answer individual requests by any route for advice on any matter concerning your disease. Please consult your physician and/or rheumatologist.
What we expect?
- You intend to participate with an initial blood sample (#1) and at least two more samples §.
- You agree on providing basic information on your disease development necessary for scientific evaluation; see form to answer.
§ You may stop your involvement in the investigation at any time, and you may do so without notice. One month before shipment of each of the last two samples, we will notify you by email forwarded to you and / or your physician / rheumatologist; see above. If you do not respond, you will not receive any further requests or information.
What does it cost?
- This is a nonprofit testing. However, the basic cost of carrying out the test must be covered:
US$ 100 for test #1. If we ask for subsequent tests, funding may allow us to carry out these tests free of charge.
What we hope to achieve?
- We hope to include for testings more than 1,000 patients with early RA from several regions and ethnic groups in the World. This should provide an understanding of the potential for this test in predicting the outcome of early RA, which would otherwise be difficult or impossible to obtain.
- International approval of IL-1a aAb as a clinically useful prognostic test in early RA and perhaps other chronic inflammatory diseases.
- The project may provide new knowledge on the role of IL-1a as well as IL-1a aAb in RA joint destruction.
The investigations agree with the Helsinki declaration concerning nontherapeutic testings:
- Written informed consent is implied from your reading of this Web site together with your physician / rheumatologist, your voluntary shipment of blood sample(s), and your signed IIR disclaimer included in the feed-back email from IIR.
- You are entirely free to cancel the last testings without notice and without further interference from IIR.
- The investigation team will discontinue testings if in our judgement they may be harmful to the patients. In this case, written information (email) stating the reason(s) for this will be provided.