Been in A Clinical Trial? Share Your Experience!

Have you participated in a clinical trial for lupus? If so, what do you wish you would have known before starting the study? Share your experience with others living with lupus who may be considering participating in a clinical trial. April’s host, Kenneth Getz from CISCRP, will add insight and information to the experiences of those who have participated in or are currently participating in lupus research trials. Submit your story now!

LFA's "Participating in a Clinical Trial" Webchat to be Held Wednesday, September 9 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's Webchat is next Wednesday afternoon, September 9, at 3 p.m. Eastern Time.

The LFA welcomes Mr. Kenneth Getz, who will serve as the guest expert for the Participating in a Clinical Trial webchat.

This is your opportunity to ask questions and learn from an expert. Mr. Getz is the chairman of CISCRP -- a nonprofit organization that he founded to educate and raise public awareness of the clinical research enterprise -- and a Senior Research Fellow at the Tufts Center for the Study of Drug Development where he studies R&D management and operating models, investigative site, outsourcing, and study volunteer trends and policies. Ken is also the founder and former CEO of CenterWatch, a leading publisher in the clinical trials industry and one of two businesses that he has created and sold.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, September 9. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.

Have you ever volunteered for a clinical study to obtain health care?

The Lupus Foundation of America is assisting a mid-Atlantic area health reporter who is working on a story about people with lupus who may have volunteered to participate in a clinical study as a means to obtain health care that they otherwise may not have been able to secure. If you or someone you know fits this profile, and are interested in participating in a telephone interview for a radio program, please contact Duane Peters via email at peters@lupus.org.

Ideally, the reporter would like to interview someone from the mid-Atlantic region (PA, NJ, DE, MD); however anyone who fits the profile is encouraged to reply, if interested. The reporter wishes to complete the interview by no later than this Friday, August 28.

When responding, please include information about yourself, including your name, age, city and state, email address, daytime telephone number, and information about the clinical study in which you participated. This information will be shared with the reporter who will select one or more individuals to interview.

Human Genome Sciences Completes Enrollment for Lymphostat-B Phase 2 Clinical Study

Human Genome Sciences, Inc., of Rockville, Maryland, has announced completion of enrollment for the second of two phase two clinical studies of Lymphostat-B, a potential new treatment for lupus. "The LFA congratulates officials of Human Genome Sciences, Inc. for passing this important mile marker," said Sandra C. Raymond, President & CEO of the Lupus Foundation of America. "Millions of people worldwide suffering from lupus have waited nearly five decades for safe, effective and tolerable treatments to manage lupus."

"We look forward to reviewing the results of these trials when they are completed in 2009, as well as data from trials of other promising treatments in the near-term pipeline," said Raymond. "This is an exciting time in lupus drug development and we are encouraged that physicians will soon have new tools to managing this devastating and life-threatening disease."

Read the Human Genome Sciences Press Release.

Lupus Foundation of America Launches Center for Clinical Trials Education

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 programs of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programs 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 centers 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 center,” 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 Genetic Studies Seeks Volunteers

The Lupus Genetic Studies at the Oklahoma Medical Research Foundation (OMRF) continue to look for families of all ethnic backgrounds, in which one or more individuals has been diagnosed with systemic lupus.

Qualifying participants help by completing some study paperwork and donating a one time blood sample. Travel to Oklahoma City is not necessary and there is no cost to participate.

Additionally, OMRF is looking for individuals with no lupus or lupus in their families to participate for comparison studies.

To learn more, visit the OMRF website for more information.