About 1.5 million people in the United States have lupus, an illness that occurs when the immune system attacks healthy organs and tissues. Of these are 9 out of 10 women.
Lupus is a complicated disease that is difficult to diagnose and be treated even more difficult. Scientists look at lupus from many different perspectives so that they can better understand what triggers it – and how to support those who live with the disease.
Patient -operated research: Ray
Another resource of the Lupus Foundation of America is an accelerated data platform called Ray: Research. Ray allows people with lupus and their supervisors to share their lupus experiences and to actively participate in the examination of the disease. The information collected by Ray helps the researchers to develop new treatments and find ways to improve the daily life of people who live with lupus.
Entry to Ray contains nothing other than filling out an online survey. Your information will be passed on with the researchers anonymously, which means that you remain 100% confidential.
Observation studies: Lupus Landmark Study
An observation study is one in which researchers examine a group of people without giving them treatment or other interventions so that they can collect information.
The Lupus Research Alliance is currently carrying out an observation study to treat lupus. It is called Lupus Landmark Study (LLS) and will follow and collect information from 3,500 people with lupus.
The Lupus Research Alliance is looking for people who join LLS. You can join if you have the most common type of lupus, systemic lupus erythematosus (SLE) and are:
- 18 years or older at the time of enrollment
- Agree
- Non -pregnant
- Able to take part in the necessary study visits
Patient Register: CDC-financed research
iStock.com/Jacob Wackerhausen
A patient register is a collection of information about people with a certain state of health or diagnosis. The centers for the control and prevention of diseases (CDC) currently finance five regional lupus registers in the United States.
These registers are:
- Emory University (Georgia)
- Mayo clinic (Minnesota)
- New York University
- University of California, San Francisco
- University of Utah
The goal of these registrations is to increase the understanding of who gets lupus and how life with the disease affects them. These registrations also help to improve understanding of the way in which health differences affect people with lupus.
Health differences are differences in health that are associated with greater questions of the unequal resources and social, economic or ecological disadvantages. These differences in health results include life expectancy, health and rates from avoidable diseases and deaths in a population.
Health differences are associated with factors such as breed, gender, geography, income and access to health care. For example: Lupus affects people of all breeds and ethnic groups, but the disease in black women is three times more common than white women – and they have serious illnesses more often.
Experts are not sure why Blacks are hit by Lupus so much harder, but they believe that genetics, hormones and environmental problems could play a role.
Find hope through research
Lupus is a complex illness with a variety of symptoms that affect many parts of the body. This makes it difficult to treat, but it also creates many research opportunities.
Regardless of whether you take part in a clinic or stand in front of your computer, you may be able to contribute to the development of new treatments for lupus. Talk not only the resources mentioned above, but also to your health service provider about clinical studies or other types of research that can help you – and everyone else who lives with lupus.
