This evening I finished an online survey about my lupus.
For several years, I have been participating in a research project conducted by the National Data Bank for Rheumatic Diseases. The majority of the world’s current lupus research is conducted in research hospitals and large research centers. However, this NDB Lupus project follows Lupus patients who are “in the community” and who receive their treatment from their own local family doctors and rheumatologists.
Twice each year I answer a series of detailed questions. Occasionally, I have received a phone call from one of the researchers at the National Data Bank for Rheumatic Diseases. They were very interested in talking to me, and getting my personal input as they followed up on a new development or change in my health or treatment.
After finishing tonight’s online survey, it ended with a summary of my lupus status from 2007 through 2011. I was clear when my remission began ending, with an abrupt change in direction in the summer of 2009. That summer, I began managing the affairs of my elderly father with advanced dementia. I traveled weekly between August and October going back and forth between my home and the state where he lived. After his 2 month hospitalization, I sold his house and eventually moved him nearby to a residential dementia care facility in my city. The graph shows as the low point in my lupus activity unmistakably!
NDB research is concerned with important issues for people with SLE: which treatments are most effective, symptoms, side effects and long term-outcomes. In addition, they are interested in medical costs, quality of life, ability to work and function, price of medications and the extent to which medical treatments actually improve people.
NDB research adds a human touch to the important basic science and immunology work performed at university centers.
NDB performs its research primarily by getting information from people who have SLE. They do it by mailed questionnaires or secure online web forms.
If you have lupus, they need your help.