Advanced Search
Current and Breaking News for Professionals, Consumers and Media




News : National Author: Staff Editor Last Updated: Sep 7, 2017 - 10:06:33 PM



Lupus Foundation of America Launches Online Lupus Registry

By Staff Editor
Apr 21, 2017 - 10:49:26 AM



Email Newsletter icon, E-mail Newsletter icon, Email List icon, E-mail List icon Sign up for our Ezine
For Email Marketing you can trust


Email this article
 Printer friendly page

(HealthNewsDigest.com) - WASHINGTON
April 21, 2017 -- The Lupus Foundation of America announced today the launch of the Research.forME™ Lupus Registry (Registry), an online data collection tool for people living with lupus and caregivers to share their experiences about the devastating and unpredictable disease. The Registry, located at resources.lupus.org/registry, will help to inform the development of future clinical research and new lupus treatments, as well as provide valuable information about the impact of the disease on the individual and their loved ones who are affected by lupus.

"The lack of valuable patient data is a significant challenge for researchers conducting lupus clinical trials," said Gary S. Gilkeson, M.D., chair of the Lupus Foundation of America Medical-Scientific Advisory Council. "With the Research.forME Lupus Registry, researchers will have access to a strong collection of data about people's different experiences with lupus, and be able to match potential clinical trials based on this information. This will allow the lupus research community to produce more meaningful data, which will accelerate the development of new treatments and help to unravel the mysteries of lupus."

The Registry is designed to serve as a multi-purpose resource for people with lupus, and has the potential to greatly improve patient-centered research participation. Participants in the Registry will be provided with information about relevant research studies and will have the ability to impact the development of future research questions.

Enrolling in the Registry consists of an individual completing a survey on lupus quality of life, diagnosis, treatment and care. This information will give researchers insight into the progression and potential environmental factors of lupus, the average quality of life, and how the disease affects different people.

As an integral part of the PCORI PARTNERS Patient Powered Research Network (PPRN), a network of research and advocacy organizations including Childhood Arthritis & Rheumatology Research Alliance (CARRA), the Arthritis Foundation, CureJM and a quality improvement network- PR-COIN- the Registry will include data on children and collect valuable information on the different childhood rheumatic diseases represented by the PPRN.

To learn more and enroll in the Research.forME Lupus Registry, visit resources.lupus.org/registry.

For the full release, click here: http://www.lupus.org/research-news/entry/announcing-online-lupus-registry

###



Top of Page

HealthNewsDigest.com

National
Latest Headlines


+ Adolescent Females Were Especially Vulnerable to Mental Health Impact of Pandemic-Related School Closings
+ Alarming Prevalence of Smell, Taste Loss During COVID’s Delta Surge
+ Correct Posture in Real Time with the Help of Machine Learning
+ Get a COVID-19 Booster
+ What’s In The Water?
+ Harmless Cells Turn Into Ruthless Trained Killers
+ Stress Also Among Wild Life
+ Silk Improves Function of Masks
+ Drug That Lowers Blood Sugar Also Reduces Blood Vessel Dysfunction
+ Gastritis: Its Symptoms



Contact Us | Job Listings | Help | Site Map | About Us
Advertising Information | HND Press Release | Submit Information | Disclaimer

Site hosted by Sanchez Productions