What is Biobanking?
Autoimmune diseases only occur in less than 5% of the USA population. Due to our small patient population, it is difficult to obtain large numbers of serum, urine, and synovial fluid (joint fluid) samples at any given point of time to study. These samples are required for researches to learn more about autoimmune diseases and treatments. By collecting a few tubes of extra blood, urine, or synovial fluid (joint fluid) from our patients when they are already having blood work or a procedure performed allows us to provide researches with the tissue samples they need. The samples are shipped to a central location from across the USA and frozen until they are required in a study.
When a study needs samples from a certain population (ex Rheumatoid Arthriits) the researchers are able to go to the refrigerator and instantaneously have a large number of samples from patients all across the USA! The research is therefore able to proceed more efficiently and with less delay. Also, If we have a larger pool of patient samples, the researcher can perform sub-analysis of the samples and disease. For example, in a Rheumatoid Arthritis study, the researches may look at the difference in the serum of patients with blood test positive vs blood test negative disease.
In many collections, to provide even more information to the researchers we also collect clinical data from the patients during the time of sample collection. For example we may collect date regarding what medication have worked or not worked to control patient’s Rheumatoid Arthritis. This information is then uploaded into a central database so that the characteristics of your disease can be linked to your donated samples. The process is COMPLETELY BLINDED TO NAME. Once your sample is submitted it cannot be traced back to you. There is no loss of patient confidentiality, but there is also no way to return your donated samples since we cannot differentiate your samples from any other donated sample.