The Lupus Foundation of America (LFA) has announced the launch of the Center for Clinical Trials Education (CCTE), a resource for people interested in learning about and joining lupus clinical trials.
The initial programmes of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programmes on clinical research offered through the LFA's network of 38 chapters around the country.
The CCTE Website (www.lupus.org/clinicaltrials) has extensive information about clinical trials and clinical trial participation. It includes information on the rights and responsibilities of study volunteers and a list of important questions for someone with lupus to consider before joining a study. A trial-locating service on the Website has links to existing lupus clinical trials. Visitors can find details about individual studies, whether they are seeking volunteers, and the medical centres where the trial is being conducted. Future enhancements to the Website include a registry where individuals with lupus can volunteer to participate in current or future trials underway in their area.
"The growing number of lupus clinical trials and the rising level of interest among people with lupus about clinical research led us to the decision to create this new centre," said Sandra C. Raymond, the LFA's president and chief executive officer. "We have already seen an increase in demand for people with lupus to serve as study volunteers. At the same time, people with lupus have voiced frustration in finding trusted information to make informed decisions about joining a trial. The CCTE will help meet those needs."
Increased efforts to develop better treatments have created new challenges that the LFA is working to address. According to Ms. Raymond, currently there are approximately 51 lupus clinical trials and 37 compounds being tested as lupus treatments. She estimates that as many as 22,500 people with lupus will be needed as volunteers for research studies in the next year. The CCTE will make it easier for people with lupus to identify trials underway in their area.
The LFA is partnering with the Center for Information and Study on Clinical Research Participation (CISCRP), an independent and internationally recognized not-for-profit organization dedicated to clinical research education. Through this relationship the CCTE Website is providing information about clinical trials in English and Spanish tailored to people with lupus.
"Whether to participate in a clinical trial at a given time is a very personal decision," noted Joan T. Merrill, M.D., medical director of the LFA. Sometimes it makes sense to participate if current treatments aren't working, if there are side effects of the treatments a person is taking, or just because it's clear that without clinical trials, there won't be progress in treating lupus. But not everyone is a candidate for a clinical trial. People need to talk to their doctor but also do their homework to learn as much as they can about what's involved before they volunteer for a clinical trial. The Lupus Foundation of America's CCTE provides a way for them to get that information, from a source they trust.
Lupus is an autoimmune disease which is the result of an unbalanced immune system that can become destructive to any major organ or tissue in the body. Lupus is unpredictable and potentially fatal, yet no satisfactory treatment or cure exists. Its health consequences may include heart attacks, strokes, seizures, or sudden organ failure. Current treatments include immune-suppressing agents, which have toxic side effects, increasing risks for infections and other bodily damage. The LFA estimates that more than 1.5 million Americans have some form of lupus. Despite the prevalence of lupus, there has not been a new treatment approved specifically for lupus in the past four decades.
Although lupus can strike any person at any age, nine out of 10 people with lupus are women, and the disease usually (or most often) develops between the ages of 15 and 45. Lupus is two to three times more common among women of colour-African Americans, Hispanics, Native Americans, and Asians.
The Lupus Foundation of America (LFA) is the nation's foremost non-profit voluntary health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its network of nearly 300 chapters, branches, and support groups conduct programmes of research, education, and advocacy.