Lupus Nexus

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.

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.

A biomarker is a distinct characteristic that can be measured in biological samples to indicate normal and diseased processes in the body.

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.

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.

For any questions, submit your contact information and message via the form above, or contact LupusNexus@lupusresearch.org.