Leading the way to a cure

Lupus Research Update: 2010 Volume 3

Volume 3, 2010 - Online Edition | In This Issue

A Major Advance in Use of Steroids >
Faces of Lupus: CELEBRATING 10 YEARS >
The Role of Vitamin D in Lupus >
Registries Help Guide Lupus Research and Treatment >
Milestones in an Illustrious 10-Year History >
Lupus News Corner >

Registries Help Guide Lupus Research and Treatment

Many patient registries around the country store extensive, invaluable data on large, diverse populations of people with lupus.

This information is being used to guide research, as well as study the safety and efficacy of particular medical therapies.

The primary registry is the Lupus Registry and Repository (LRR) of the NIH’s National Institute for Arthritis, Musculoskeletal and Skin Diseases, the leading government research institute for lupus. Founded in 1996, the LRR was established to study people with lupus and their families to identify genes that may determine susceptibility to the disease.

Hospitals, medical centers, and universities also maintain lupus registries, focusing on such concerns as neonatal and cutaneous lupus as well as the antiphospholipid and fibromyalgia syndromes.

Many ALR-funded researchers foster the work done by registries across the country.

Lupus registries can be useful for a range of therapeutic needs — such as:

   • developing treatment guidelines

   • optimizing the balance of risks and benefits

   • monitoring treatment safety

   • recommending behavior changes

   • improving the quality of care.

1.5 million

people in the U.S. have Lupus.

172 million

dollars committed to lupus research by the Lupus Research Alliance.

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