English
About 1.5 million people in the United States have lupus, a disorder that occurs when the immune system attacks healthy organs and tissues. Of these are 9 out of 10 women.
Lupus is a complicated disturbance that is difficult to diagnose and treat even more difficult. Scientists study lupus from many different perspectives to better understand what it triggers and how people who live with this disorder can help better.
Research results funded by patients: beam
Another resource of the Lupus Foundation of America is a computer platform called Ray: Research, which has been accelerated by you[Investigaciones aceleradas por ti]. Ray makes people with lupus and their supervisors their experiences with lupus and actively participate in the study of the disorder. The information gathered by Ray is useful for researchers to develop new treatments that identify methods to improve the life of people with lupus.
Registration in Ray only requires answering a virtual survey. Your information will be passed on with researchers anonymously, which means that you remain completely confidential.
Observation studies: Lupus Landmark Study
In an observation study, researchers assessed a group of people without providing treatment or other interventions to record information.
The Lupus Research Alliance is currently performing an observation study that will be useful for the treatment of lupus. Has the name of Lupus Landmark Study [Estudio de referencia de lupus] (Lls) and monitor and collect information from 3,500 people with lupus.
The Lupus Research Alliance is looking for people who take part in the LLS. You are justified if you have the most common type of lupus, the systemic lupus erythematosus (les) and:
- At the time of registration, you have at least 18 years or more
- You can give approval
- You are not pregnant
- You can take part in the necessary visits to the study
Patient files: Research that is financed by CDC
iStock.com/Jacob Wackerhausen
A patient file is a collection of information from people with a certain medical disorder or diagnosis. The Centers for Disease Prevention and Control (CDC) currently finance five regional lupus records in the USA.
These records are:
- Emory University (Georgia)
- The Mayo Clinic (Minnesota)
- New York University
- The University of California, San Francisco
- Utah University
The aim of these records is to raise awareness of who gives them lupus and how this disease affects them. These records are also useful to better understand how health differences affect people with lupus.
Health differences are health differences associated with more important problems of inequality in resources and social, economic and ecological disadvantages. This includes differences in the clinical results of life expectations, health conditions and the mortality rates as well as avoidable diseases of a population.
Health differences are associated with factors such as breed, gender, geography, income and access to medical care. For example: Lupus affects people of all breeds and ethnicity, but this disorder is three times more common for black women than for white women, and black women have more serious disorders.
Experts are not sure why Lupus affects black people much more, but they believe that genetics, hormones and environmental factors play a role in this.
Find hope with research
Lupus is a complex disorder with a variety of symptoms that affect many parts of the body. Although this hinders his treatment, it also creates many research opportunities.
Regardless of whether you take part in a clinic or a computer, you can contribute to the development of new treatments for lupus. Talk not only the resources mentioned above, but also with your medical provider about clinical studies or other types of research that could be useful for you and for all people with lupus.