Current Lupus Clinical Studies / Trials

Clinical research is the main way that research doctors and scientists study disease in people. Research studies look at what causes disease, who is at risk, and how to prevent, diagnose, treat, and if possible, cure disease. In order to study disease in this way, people like you, who have a particular condition or illness, are frequently asked to volunteer to be a part of clinical research studies.

These studies vary widely in what they require of a volunteer, but their ultimate purpose is to gather knowledge that will help improve people's health and well-being. Participation in a study may benefit you directly, indirectly, or not at all, but the knowledge gained is important for furthering advances in diagnosis and treatment.

Here are some current clinical studies & trials that deal with lupus. Click on each image to learn more about that particular study / trial.

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Walk for Lupus Now Events for early May 2008, Other LFA-Related Updates

Morning everyone ... well the arrival of spring here in DC was short lived. It's cool outside and raining. I think this is supposed to last thru mid-week. But 70 degree temps may return Thursday. I'll be waiting patiently.

Saw an older thriller over the weekend: 1979's When A Stranger Calls. Beginning was great. End was great. The middle was dull.

Couple of lupus-related updates to share, so let's get down to business.

Walk for Lupus Now

LFA's Walk season is well underway. As you know, money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here are some of the upcoming Walks, taking place in early May 2008.

• Anchorage, AK -- Friday, May 2, 2008
• Charlotte, NC -- Saturday, May 3, 2008
• Houston, TX -- Sunday, May 4, 2008
• Vernon Hills, IL -- Saturday, May 10, 2008
• Columbus, OH -- Saturday, May 10, 2008
• Hickman County, TN -- Saturday, May 10, 2008
• Salt Lake City, UT -- Saturday, May 10, 2008
• West Hartford, CT -- Sunday, May 11, 2008

LFA Message Boards

As of this morning, there are 864 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.

LFA Partners with CaringBridge

The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.

It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.

Awards Gala

The LFA's Fifth Annual Awards Gala will be held Wednesday, May 7, 2008 at the Mandarin Oriental Hotel in downtown Washington DC. If you are interested in purchasing tickets or securing corporate sponsorship, please contact Paola Williams at williams@lupus.org.

LFA Research enewsletter

The LFA's research enewsletter went out last week. If you'd like to take a look at it, we have archived a copy online. You can view it here.

If you'd like to sign up to receive the LFA's free enewsletters, you can sign up here.

That's the scoop from the LFA for now.

Until next time, Wick

Other Ways to Donate to the Lupus Foundation of America

Good morning everyone.

Friday has arrived which means the weekend is right around the corner. I hope you have some fun or relaxing plans in place. I do. On Saturday, I'm catching the B-52s in concert with a friend of mine, here in downtown DC. Really looking forward to that.

Let's turn to lupus-related news.

I've received a bunch of emails from people, wanting to know what are some of the ways they can make a donation to the Lupus Foundation of America -- other than by writing a check or making an online donation.

There are several other ways to donate to the Lupus Foundation of America. I will share 2 of them with you now.

Donation of Life Insurance

A life insurance policy that has a substantial cash surrender value can be donated to the Lupus Foundation of America. You might have purchased the policy to provide income protection for a spouse now deceased, or to educate your children who are now adults. Naming the Lupus Foundation of America as the sole or partial beneficiary of your life insurance may allow you to make a substantial gift at little or no cost to you.

You also can use life insurance to replace for your heirs the assets that you have donated to the Lupus Foundation of America through a will or trust. A life insurance trust, when used in conjunction with a charitable remainder trust, may help achieve many favorable financial objectives. Contact the Lupus Foundation of America by calling 202-349-1158, or by emailing donate@lupus.org.

Donation of Other Assets

Gifts of Real Estate
In some cases, you may be able to donate a primary residence, vacation home, commercial building or plot of land to the Lupus Foundation of America.

A gift of real property can provide you with a combination of advantages and tax savings. Some of the benefits of a real estate gift that is accepted by the LFA may include:

• An immediate charitable income tax deduction in the year you make the gift.
  
• Avoiding capital gains taxes at the time of the transfer.
  
• The opportunity to live in your home or use the property for the rest of your life.
  
• Knowing that the property will be excluded from any estate and inheritance taxes.

Because each property and gift plan is unique, any real estate gift will require careful consideration by your legal and tax advisors and by our advisors and Board of Directors as well.

Gifts of Retirement Benefits
The benefits of retirement plans payable at your death may be subject to both income and estate taxes. If you name the Lupus Foundation of America as the beneficiary, the full amount of the benefits passing to the LFA at your death will pass free of estate and income taxes. This may make designating the LFA to receive retirement benefits the most tax-effective way to make a planned gift.

Gifts Of Intellectual Property
Intellectual property such as patents, copyrights, trademarks, trade secrets, artworks, musical compositions, and other similar or related property rights, are another form of charitable giving gaining popularity. These gifts can provide tax-advantages for individuals who want to make a charitable gift. However, income, gift and estate tax considerations are very complicated and require careful planning. Consult your legal and tax advisors for more information on these and other non-cash contributions.

If you have any questions about any of these ways to donate, please contact the Lupus Foundation of America by calling 202-349-1158, or by emailing donate@lupus.org.

Have a great weekend!

Until next time, Wick

Lupus.org Spotlight: Ask the Lupus Experts

Happy Wednesday to you.

Thought I'd do something a bit different for this entry. There are a lot of great resources on the lupus.org Website. Every so often, I will take the opportunity to highlight some of these areas via the blog.

Today, I'd like to tell you about the Ask the Experts section.

The Ask the Experts section is a place where you can submit a question to our panel of nationally-renowned lupus medical experts. While our panelists cannot respond to every question submitted, they will select questions that may be of interest to a broad cross-section of people living with lupus, and we will post those questions -- and the experts' responses -- on the lupus.org Website.

The form to submit a question is here.

The LFA archives all questions that have been answered by the experts. You can view the archive here. To more quickly find what you're looking for, questions and answers have been grouped into topical categories. Some of those categories include:

• Antiphospholipid Antibodies
  
• General Questions about Lupus
  
• Immune Suppressants Used for Lupus
  
• Kidney Disease and Lupus
  
• Lupus in Men
  
• Women's Issues & Lupus
  
• Your Skin and Lupus

Definitely check out all of this great information.

Until next time, Wick

Lupus Funding Available through Dept. of Defense Peer Reviewed Medical Research Program

Hey everyone ...

It's a completely soggy morning here in DC. It's raining like nobody's business. Before I jump into lupus news, I did want to give a special shout-out to the Lupus Foundation of America, Greater Washington Chapter, which hosted its Walk for Lupus Now walk this past Saturday.

The Walk went very well. The weather was perfect. There was a fantastic turnout. I don't think it was possible to have asked for a better day! I do also want to say "congrats" to my colleagues in that chapter -- Penny Fletcher, Elizabeth Muniot and Sarah Guy. You all did a phenomenal job!

Donations are still being accepted for the LFA, Greater Washington Chapter's Walk. You can make your donation here.

And now, to other lupus news.

Wick

Lupus Funding Available through Dept. of Defense Peer Reviewed Medical Research Program

The Department of Defense (DoD) has once again issued a Request for Proposals for medical research studies to be funded through the Congressionally Directed Peer Reviewed Medical Research Program (PRMRP). Through its advocacy initiatives that began in 2003, the Lupus Foundation of America (LFA) pioneered efforts to have lupus and lupus biomarkers included as disease areas eligible for research funding through the PRMRP. The LFA made a persuasive case to DoD officials that described the relevance of lupus research to military personnel and their dependents. These efforts have opened a new source of much needed funds to support research on lupus.

The LFA is pleased that Congress has appropriated another $50 million in 2008 for the PRMRP, enabling funding of additional studies on lupus. Since including lupus and lupus biomarkers among the areas approved for funding, the PRMRP has awarded $5 million in new funding to support important studies. Last year, the PRMRP funded three new studies and two studies were funded in 2006.

According to the Department of Defense, the PRMRP was established in 1999 to provide support for military health-related research of clear scientific merit. Appropriations for the PRMRP from Fiscal Year (FY) 1999 through FY 2006 totaled $344.5 million.

The PRMRP program announcements reports that the vision of the FY08 program is “to find and fund the best medical research to protect, support, and advance the health and welfare of military personnel and all beneficiaries.” DoD officials seek “innovative ideas to foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools, or improvements in clinical policies/guidelines; or clinical trials that address an immediate clinical need.

Funding for lupus research through the DoD and all other relevant federal agencies has been a long-recognized priority for LFA advocacy efforts. Due to the changing demographics of the military population, there is an ever-increasing prevalence of lupus in military and Veterans Hospital Clinics. The LFA recognized this emerging health issue and worked to have lupus included in the PRMRP to advance research on lupus, which ultimately will help military personnel and their families affected by lupus.

• Download the PRMRP Program Announcement (PDF)
  
• Download the PRMRP Application and General Information (PDF)
  
• Visit the PRMRP website for additional information

Walk for Lupus Now Events in April / May 2008

Morning everyone ... I think Spring has FINALLY arrived. Today and this weekend, it's supposed to go to high 70s and maybe hit 80 degrees. That makes me very happy. Walking around downtown DC during lunch yesterday was so very nice. No jacket required. I think we're all hoping the cold weather is gone for the year.

Lots to share with you today, so let me jump in.

Walk for Lupus Now

As I have mentioned before, it's now Walk season here at the LFA. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here is a listing of upcoming Walks, taking place in April / May 2008.

• Washington, DC -- Saturday, April 19, 2008 (I will be there this weekend! If you're in the metro-DC area, I hope you can come join me!)



• Albuquerque, NM -- Saturday, April 19, 2008



• Atlanta, GA -- Saturday, April 26, 2008



• Las Vegas, NV -- Saturday, April 26, 2008



• Dallas, TX -- Saturday, April 26, 2008



• Anchorage, AK -- Friday, May 2, 2008



• Charlotte, NC -- Saturday, May 3, 2008



• Houston, TX -- Sunday, May 4, 2008



• Vernon Hills, IL -- Saturday, May 10, 2008



• Columbus, OH -- Saturday, May 10, 2008



• Hickman County, TN -- Saturday, May 10, 2008



• Salt Lake City, UT -- Saturday, May 10, 2008



• West Hartford, CT -- Sunday, May 11, 2008



• Hot Springs, AR -- Saturday, May 17, 2008



• St. Petersburg, FL -- Saturday, May 17, 2008



• Oklahoma City, OK -- Saturday, May 17, 2008



• New York City, NY -- Sunday, May 18, 2008

Again, if there is no Walk near you, you can still help the LFA by setting up your own fund-raising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

LFA Message Boards

As of this morning, there are 793 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.

Upcoming May 2008 Webchat -- Being Newly Diagnosed with Lupus

The first of 2 May 2008 Webchats will take place Wednesday, May 14 at 3 p.m. Eastern. Dr. Don Thomas will be the guest expert on the topic: "Being Newly Diagnosed with Lupus." We're expecting a good turnout. Hope you can join us!

That's all the lupus scoop from my end. Wishing you a fantastic weekend!

Until next time, Wick

Lupus Foundation of America Partners with CaringBridge

Good morning everyone ...

Hope this finds you well. I am back -- and well rested -- from my trip to Phoenix. Was a great trip: perfect weather, awesome visit to the Grand Canyon and Sedona, and I got to see friends I haven't seen in years. Fingers are crossed that my pictures turn out. I am ready to jump back into the thick of things.

So ... now to lupus news.

The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.

Founded in 1997, CaringBridge is a free, non-profit Internet service that now connects more than 15 million people each year. The service is always free, private and personalized, and it takes just a few moments to set up your own CaringBridge website. Like the LFA, CaringBridge is a national voluntary health agency and a member of the National Health Council. Its mission is to bring together a global community of care powered by the love of family and friends in an easy, accessible, and private way.

It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.

Keeping in touch with loved ones during difficult times is important. Together we are stronger.

Until next time,
Wick

LFA Representatives Mercedes Yvette and Dr. Gary Gilkeson Discuss Lupus on ABC News Now

Lupus Foundation of America (LFA) national spokesperson, Mercedes Yvette, and chair of the LFA Medical-Scientific Advisory Council, Dr. Gary Gilkeson, appeared on the ABC News Now program, Healthy Living, on April 7 to discuss lupus. Mercedes discussed how lupus has affected her life and her role as a spokesperson for the LFA. Dr. Gilkeson provided the program’s more than 35 million viewers an overview of lupus, its impact, plus an update on new developments in research and treatment.

Mercedes won the hearts of millions of Americans through her struggles with lupus, which were chronicled in 2004 on the hit UPN Television Network show, “America’s Next Top Model,” hosted by supermodel Tyra Banks. Despite the constant pain and fatigue of living with lupus, Mercedes went on to become runner-up in the model competition. She later became a national spokesperson for the LFA while building a successful modeling career.

Dr. Gilkeson is a Professor of Medicine/Microbiology and Immunology at the Medical University of South Carolina in Charleston. He is also the Vice Chairman of the Department of Medicine for Research. Dr. Gilkeson's research and clinical interests are both in lupus, particularly lupus nephritis. His clinical focus in lupus nephritis is the factors resulting in the ethnic disparity in outcomes in lupus comparing African Americans to Caucasians.

View the segment about treating and diagnosing lupus featuring Dr. Gilkeson and Mercedes.

View the segment about living with lupus featuring Mercedes.

Lupus Blog Spotlight: Lupus and Humor

Hi everyone ...

I am heading out of town late this afternoon and won't be back until Monday, so I wanted to get another entry posted before I leave. Going to Phoenix, which is a first for me. Meeting up with some friends, and plan to visit the Grand Canyon and Sedona. Really looking forward to it.

Now let's jump into some lupus news.

LFA Message Boards

As of this morning, there are more than 720 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.

Reminder -- "Ask the Doc: Open Forum" Webchat Today

The April 2008 Webchat will take place this afternoon at 3 p.m. Eastern. Dr. Bevra Hahn will be guest hosting the chat: "Ask the Doc: An Open Forum." We're expecting a good turnout for this as we received more than 110 questions in advance of the chat. Hope you can join us!

Lupus Blog Spotlight

Finally, I would like to turn your attention to another lupus blog. It is called Lupus and Humor. The blogger is Carla. Let me share a little bit about Carla with you.

Carla's a newlywed, and she and her husband have a 5-pound dog who is "a bundle of joy and love." She's a professional musician, who writes and performs her own funny songs. She also plays guitar. Carla has recorded 3 CDs, the 3rd of which is called "Sick Humor." This CD is all medical parodies, and includes such songs as "What If Your Butt Was Gone," "Prednisone," and "Sittin' in the Waiting Room." You can get a taste of her musical stylings at her other website, thesingingpatient.com.

If you have a few moments, swing by Lupus and Humor and say hi to Carla.

Until next time, Wick

"Ask the Doc: An Open Forum" -- the Wednesday, April 9 Webchat at the Lupus Foundation of America

Morning all.

Wanted to give you a quick reminder about the Lupus Foundation of America's Webchat tomorrow afternoon, Wednesday, April 9, at 3 p.m. Eastern Time.

Dr. Bevra Hahn, Professor of Medicine, Vice-Chair of the Department of Medicine, and Chief of Rheumatology at the David Geffen School of Medicine at the University of California at Los Angeles, will host the chat, which we're calling "Ask the Doc: An Open Forum."

What does this mean? This means you can ask Dr. Hahn anything about lupus. The only guideline for this chat is that the questions cannot be specific to a particular individual. The questions need to be applicable to a broad range of people who are affected by lupus. We regret that our guest speaker cannot respond to questions about your specific case of lupus.

And now a bit about Dr. Hahn.

Dr. Hahn has been recognized for her commitment to lupus research, specifically in the areas of immunosuppressive treatments. Dr. Hahn’s research on immunosuppressive treatments for lupus, along with studies from the NIH and other institutions, has formed the firm foundation for the development of current immunosuppressive regimen for lupus.

She is co-editor of an influential medical textbook, Dubois’ Lupus Erythematosus, and a co-author of an LFA guidebook for people with lupus, their families and health care providers. Dr. Hahn is the past-president of the American College of Rheumatology.

Dr. Hahn was the 2005 recipient of the Evelyn V. Hess Research Award, LFA’s highest honor for research on lupus, in recognition of Dr. Hahn’s life-time achievements to help find the causes of and cure for lupus.

We certainly hope you can join us tomorrow. To do so, you can log in to the live chat here.

After the chat, you are invited to continue the discussion in our message boards.

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

Until next time,
Wick

Would You Like to Share Your Story? LFA Seeks Interviewees for Article

Good morning everyone ...

Hope you had a good weekend. The weather was a bit unpleasant / uncooperative here in DC. Cold, gray, gloomy and rainy. I spent Saturday recovering from my trip to the personal trainer on the previous Thursday evening. Boy was that a humbling experience. But I guess you have to start somewhere.

On the advice of a friend, I watched 1967's Thoroughly Modern Millie (Julie Andrews and Carol Channing) this weekend. It was ... peculiar. And there was a very odd subplot that seemed to be tacked on to the storyline.

And now to lupus news.

As a reminder, this morning at 10:30 a.m Eastern time, Mercedes Yvette, LFA spokesperson and 2004 runner up on America's Next Top Model, and Dr. Gary Gilkeson, chair of the LFA’s Medical-Scientific Advisory Council, will appear on "Healthy Life," a regular health segment on ABC News Now. We hope you can tune in.

Update: We have just learned that the actual episode will not air online today; however the taping of the episode is taking place today. The episode of the lupus interview will be posted online to ABC News Now in the near future. When we learn when that will be, we will share it with you. Sorry for any inconvenience. We appreciate your patience.

Looking for Article Interviewees

Are you someone who has been profoundly affected by the love and support of a friend or family member in your battle against lupus?

If so, LFA wants to talk to you. We are looking for individuals who want to share their story about how a friend/loved one has helped support them in their disease.

If you have a story you would like to share, please write a few paragraphs about your experience, and then email it to us at info@lupus.org. Someone will then follow up with you. That's all there is to it.

Until next time,
Wick

LFA Spokesperson Mercedes Yvette and Dr. Gary Gilkeson to Discuss Lupus on ABC News Now on Monday, April 7 at 10:30 a.m. Eastern

On Monday, April 7 at 10:30 a.m. Eastern time, Mercedes Yvette, Lupus Foundation of America spokesperson and 2004 runner up on America's Next Top Model, and Dr. Gary Gilkeson, chair of the LFA’s Medical-Scientific Advisory Council, will appear on "Healthy Life," a regular health segment on ABC News Now.

Mercedes Yvette, who has lupus and who was featured on the Spring 2007 cover of Lupus Now magazine, and Dr. Gilkeson will join Dr. Tim Johnson, the chief medical correspondent for the ABC Television Network, to talk about lupus.

Mercedes will share how lupus has affected her life, and what she is doing as a national spokesperson for the LFA. Dr. Gilkeson will discuss how lupus is diagnosed and treated, and the latest research findings.

Again, the show about lupus will be broadcast live from 10:30 - 11:00 a.m. Eastern time on Monday, April 7. To view it, please visit http://abcnews.go.com/abcnewsnow, and look for "Healthy Life."

ABC News Now is a 24/7 digital cable channel available to more than 34 million users on cable, broadband and on mobile phones.

Update as of Monday, April 7, 2008: We have just learned that the actual episode will not air online today; however the taping of the episode is taking place today. The episode of the lupus interview will be posted online to ABC News Now in the near future. When we learn when that will be, we will share it with you. Sorry for any inconvenience. We appreciate your patience.

Lupus Foundation of America Recognizes April as National Minority Health Month

Good morning everyone.

Hope your respective weeks are treating you well so far.

I have been busy here at the LFA. Working on a few large projects. One of them ... which I will share with you here ... is a new mini-site for the lupus.org Website. We're going to have a new and comprehensive section on lupus and clinical trials. We're all very excited about that. This will be launching some time in May.

May is shaping up to be a busy month. In addition to the launch of the clinical trials section, we will also host our annual awards gala on May 7, which is then closely followed by World Lupus Day on May 10.

Finally, in recognition of April being National Minority Health Month, I wanted to share with you a column from Lupus Now magazine. Check it out.

Until next time, Wick

Cultural Communications Quiz: Know Yourself

Your upbringing, background, and culture shape the attitudes you have toward physicians and the health care system as a whole. Take a moment to review these questions and reflect on how your beliefs and viewpoints might affect your health decisions.

• Were you raised to trust authority or question it?


• When an authority figure (like a physician) tells you to do something, are you likely to follow instructions carefully?


• Have you (and your family) had mostly positive experiences with physicians? Or do you second-guess their decisions?


• Do you feel comfortable asking your physicians tough or uncomfortable questions?


• Do you ever feel like there is a language barrier between you and your doctor? Do you have trouble expressing concerns? Or trouble understanding complex medical instructions?


• Have you ever felt like you could use the help of a translator?


• Do you believe that complementary or alternative medical treatments can be just as useful as standard Western medical care?


• Do you always tell your doctor about complementary or alternative medical treatments you use?


• Do you take yourself -- and your worries -- seriously? Do you take your symptoms seriously?


• Do you have strong views about the roles that men and women play in a family? Does your health ever suffer because you take on too many responsibilities at home or with your family?


• What role does religion play in your life? Do you think religion plays a role in your health?

There are no right or wrong answers to these questions. But thinking about these topics could change the way you think about your health care. For example, if you don't feel comfortable questioning authority, maybe the next time you meet with your doctor it would be helpful to bring a friend or family member who could speak up on your behalf. Or maybe you'll decide you need the help of a translator. In the end, the most important thing is to have honest and open relationships with the people who are providing your health care. Your mind, body, and spirit will all benefit.

Taken from the Spring 2007 issue of Lupus Now magazine. Written by Stephanie Stephens