The Lupus Nexus comprises four main infrastructure components: a Registry; a Biorepository; a Data Repository, Exchange, and Analysis platforM (the DREAM) and a comprehensive Quality Management System (QMS). This unique resource aims to accelerate precision medicine in lupus.
Open to the entire research community, the Lupus Nexus was collaboratively built with the input of over 100 individuals: from people with lupus and clinicians to academic and industry researchers.
The Preeminent Resource for Scientists and Clinicians
The Lupus Nexus will enable scientists and clinicians to:
- Gain a better understanding of disease heterogeneity (differences in disease presentation, symptoms, and outcomes)
- Identify biomarkers of disease progression and response to therapies
- Develop tailored, personalized treatments
The cause of lupus is not well understood, but research has shown that genetic, environmental, hormonal, and immunological factors all play a role. Not fully understanding the causes of lupus, how it develops, and how individuals with lupus respond or don’t respond to treatment hinders our ability to develop personalized treatments.
There is currently no lupus resource of this breadth and depth available to the community. Whether you are living with lupus or are a researcher investigating this complex disease, you can make a difference!
Get Involved
Explore the DREAM
The DREAM is a knowledge-exchange portal for researchers to access data, conduct groundbreaking research, and share their discoveries.
For people living with lupus, the DREAM will serve as digital space where people can access educational content, be connected to a broader community, and receive alerts to participate in lupus research opportunities. Participants in the Lupus Landmark Study (LLS) will also access their research results through the DREAM.
Still have questions? Contact Us
Whether you are a scientist, clinician or someone living with lupus, learn more about the Lupus Nexus and explore ways you can get involved. Complete the form below or contact LupusNexus@lupusresearch.org.
Frequently Asked Questions
What is a registry?
A registry is an official record of information. A research registry is a collection of information about individuals. There are different types of research registries: registries of people with a specific diagnosis or condition and registries that connect people interested in being research participants with health studies. Registries are different from biorepositories in that they only include information about an individual, but no biological samples. Typical types of information included in a registry are:
- Medical record information, including health surveys and questionnaires;
- Personal demographic information, such as your age, gender, ethnicity and race;
- Whether a person allows for recontact, for such things like additional surveys or for clinical trial opportunities.
What is a biorepository?
A biorepository is a laboratory facility that collects, stores and distributes biological materials. There are many types of biorepositories– for example, they may hold human biospecimens (like blood, urine or tissue), animal biospecimens or even be for environmental or agricultural research purposes. They may be designed for a specific diagnostic or clinical purpose, while others are solely for research—and many serve more than one purpose. Biorepositories may be designed to only store samples for a short amount of time, or to store samples for decades. With these stored biospecimens, and with the information that goes along with them, researchers may understand better how the human body works, develop new tests to find diseases, find new ways to treat diseases, or develop new products, such as drugs. Storing and gathering lots of specimens and data together can help to conduct future research and avoid re-collecting specimens and data over and over again.
What is a biomarker?
A biomarker is a distinct characteristic that can be measured in biological samples to indicate normal and diseased processes in the body.
Can I access samples or data within the DREAM?
Yes, researchers can apply for the use of biospecimens and request access to data within the DREAM. More information can be found within the DREAM researcher portal.
What is a Quality Management System (QMS)?
Quality management refers to processes that an organization takes to ensure its products and services are consistently of high quality. The intent of these processes is to increase user satisfaction, reduce the number of product defects and to improve efficiency of operations. There are four main components of a Quality Management System: planning, assurance, control and continuous improvement. The Lupus Nexus’ QMS includes all four of these components to ensure that the data and biospecimens within the registry, biorepository and the DREAM are collected, processed, stored and distributed to the highest standard.
I have another question not answered on this page; who can I talk to?
For any questions, submit your contact information and message via the form above, or contact LupusNexus@lupusresearch.org.
