We want to update you on the progress of SLE in the Community (SLEC). As introduced in our previous message, SLEC is study of lupus from the perspective of people who have lupus.
Anyone with lupus may join the study. Participants complete questionnaires twice a year, reporting on their condition, treatments and how their lives are affected. As a group, participants form a single voice that informs doctors and researchers about what it's like to live with lupus. We hope that SLEC research will improve treatment outcomes as well as improve understanding of what living with lupus is like.
SLEC has already enrolled more than 500 people into the study, and we have submitted our first research results to the American College of Rheumatology Annual Scientific Meeting this year. The study is spearheaded by the National Data Bank for Rheumatic Diseases (NDB).
The goals are to advance knowledge about the causes, outcomes, costs, treatments, and results of treatments related to lupus, by getting the perspective of the people with the disease. We believe that all people with lupus will benefit in some way from the success of this project.
Participation takes place in the home without any change to treatment, testing or special medical visits. At enrollment participants will be contacted by the NDB and baseline data will be gathered. Subsequently, patients will receive questionnaires from the NDB at six-month intervals. Questions include assessments of pain, functional status, work ability, disability, symptoms, treatments, adverse effects, hospitalizations and medical costs, among other questions.
Can your chapter help? We are still enrolling new study members, and if you haven't had a chance to let your chapter members know about SLEC, we hope you can place a notice in your newsletter or on your website. Here is a sample notice that may work for you.
You are invited to join an ongoing study of Lupus care and results of treatments. We hope you will be able to participate in this project, called SLE in the Community (SLEC). SLEC is a community-based lupus outcomes study that will help physicians and researchers better understand what it is like to live with lupus and consider lupus care treatments from your perspective. As a group, the individuals in the study form a single voice that informs doctors and researchers about what it's like to live with lupus.
If you decide to join this study, you will be asked to answer questions about how you feel and how you manage with your condition. Questions include assessments of pain, functional status, work ability, disability, symptoms, treatments, adverse effects, hospitalizations and medical costs, among other questions. This is done at home using your computer or forms that we will send in the mail. You will receive a questionnaire twice a year. There are no treatments or medical visits involved. Your current care will not be affected. Participation is absolutely free. The NDB pays all of the postage, and has a toll free phone line for questions.
The study is conducted by The National Databank for Rheumatic Diseases (NDB), a non-profit research data bank that conducts unique research in Rheumatoid Arthritis, Osteoarthritis, Fibromyalgia, Lupus and other rheumatic diseases. NDB research is designed to improve the treatment and outcomes of these conditions.
If you would like to help, you may join the study by calling 1-800-323-5871. We will mail enrollment material to you. Or, enroll now by visiting www.arthritis-research.org/lupus.htm. You will then learn more about the study in additional web pages, and have an opportunity to enroll. There is no cost to participate, and all of your information remains private and confidential.
Thank you very much for considering giving a bit of your time to help Lupus research.
SLEC is currently featured in an advertisement in Lupus Now's Summer and Fall issues, and is included in the list of studies on lupus.org
This non-profit project has IRB approval and will never release personal information.
If you have any questions, please do not hesitate to contact Kimberly Harp, SLEC Project Director, kim@arthritis-research.org, 800-323-5871 ext. 143. Or, read more about the NDB and SLEC at http://arthritis-research.org.
Thank you very much for sharing this information with your members.
Sincerely,
Robert S. Katz, M.D.
Director, SLE in the Community (SLEC)
Fred Wolfe, M.D.
Director, National Data Bank for Rheumatic Diseases