You have lupus. Your relative has lupus. There is no cure or treatment. You feel like you want to help and play an active role in the disease, but you don’t know how. You feel useless waiting until a treatment is found. You participate in meetings, you walk for lupus, you write about it, you meet people, still feel useless. There might be a more active solution. Have you ever thought about clinical trials? Yet there is no treatment, but there is a lot of research involved in lupus, giving more hope to patients and relative when they know about it. Although you may be scared at first to become a guinea pig, no clinical advancement can be done without enough participation in trials. If you choose to participate in clinical trials, you’ll become a key actor of the disease, and there may be even more benefits than disadvantages.
There are different types of clinical trials, ranging from observational to interventional. All clinical trials are designed in 4 phases with specific expected results.
Phase I generally includes healthy volunteers (this is how relatives can help). However, depending on the illness, the phase I of a clinical trial can directly include patients; In general, phase I expects results for safety concerns and dosage.
Phase II involves a small number of patients and evaluates the effectiveness and the adverse reactions.
Phase III will focus on a large number of patients, assessing the effectiveness and the monitoring of adverse events. The product can be approved by the FDA at the end of phase III, hence it is a very critical phase.
Clinical trials all together can take as long as twenty years (no kidding) until a drug (only one) is finally on the market. Even when the drug is on the market, the Phase IV starts and looks for unattended effects, optimal use etc.
If you are interested in participating, you need to talk with your physician, and ask all the questions you will have in mind to better take your decision whether or not participating.
You need to know that there are risks and benefits. You may experience major side effects or ineffective treatments, however, if the treatment is working, you will benefit from it before it is on the market. You will also play an active role in your disease.
If you still are interested in participating in a study (meaning, I persuaded you), you can look online all the studies opened in your area that you may be interested in. Look at the inclusion and exclusion criteria to make sure you are eligible to the study. For the lupus study you can search here: http://www.lupusfoundation.org/clinicaltrials/search-trials.html