About 1.5 million people in the United States have Lupus, a disease that takes place when the immune system attacks healthy organs and tissues. Of this, 9 out of 10 are women.
Lupus is a complicated disease that can be difficult to diagnose and even harder to treat. Scientists look at Lupus from many different perspectives, so that they can better understand what it activates – and how they can best support that live with the disease.
Patient examination: Ray
Another source of the Lupus Foundation of America is a data platform called Ray: research accelerated by you. Ray enables people with Lupus and their carers to share their lupus experiences and to be actively involved in studying the disease. The information collected by Ray helps researchers to develop new treatments and find ways to improve the daily life of people with Lupus.
Participating in Ray includes nothing more than completing an online survey. Your information is shared anonymously with researchers, which means that it remains 100% confidential.
Observation studies: Lupus Landmark Study
An observational study is one in which researchers study a group of people without giving them treatment or other intervention so that they can collect information.
At the moment the Lupus Research Alliance is doing an observational study to help treat Lupus. It is called the Lupus Landmark Study (LLS)And it follows and collects information from 3,500 people who live with Lupus.
The Lupus Research Alliance is looking for people to become a member of LLS. You are eligible to participate if you have the most common type of lupus, Systemic Lupus Erythematosus (SLE) and are:
- 18 years or older at the time of registration
- Able to give permission
- Untrousing
- Able to attend the required study visits
Patient registers: research funded by CDC
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A patient register is a collection of information about people with a specific health status or diagnosis. The Centers for Disease Control and Prevention (CDC) currently finances 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 purpose of these registers is to increase the concept of who gets Lupus and how living with the disease influences them. These registers also help improve the understanding of the ways in which health differences influence people with lupus.
Health differences are differences in health that are linked to larger issues of unequal resources and social, economic or environmental seams. These differences in health results include life expectancy, health status and percentages of diseases and deaths to be prevented in a population.
Health differences are linked to factors such as race, gender, geography, income and access to health care. For example: Lupus influences people from all races and ethnic groups, but the disease is Three times more common In black women than white women – and they rather have a serious illness.
Experts are not certain Why black people are hit so much harder by Lupus, but they think that genetics, hormones and environmental gains can all play a role.
Find hope through research
Lupus is a complex disease with a wide range of symptoms that influence many parts of the body. Although this makes it difficult to treat, it also creates many opportunities for research.
Whether you are participating in a clinic or is in your computer, you may be able to contribute to the development of new treatments for Lupus. In addition to viewing the aforementioned means, talk to your caregiver about clinical tests or other types of research that can help you – and everyone who live with Lupus.
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