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Interested in Participating in a Health Communication Survey?
On the Road to a Cure writes:
I recently became aware of a health-related study / survey that I wanted to share with you. Purdue University is currently working on a health communication study. Specifically, they’re looking to examine how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc. The study / survey is purely academic in nature and takes no longer than 5-7 minutes to complete. In the survey, they use the term “blog” to refer to any online activity where you might read or share information in communities such as blogs, internet forums, and discussion boards. If you are interested in participating, you can take the survey here. Purdue University hopes the findings of this study could lead to better management capacities of chronic diseases, as well as an increase in funding for research related to online communities. If you choose to take the survey, thank you for doing so. Until next time, WickRead Full Story Read More and Discuss Lupus Foundation of America Launches Center for Clinical Trials Education
On the Road to a Cure writes:
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.”Read Full Story Read More and Discuss Lupus Blog Spotlight: Mommy's Broken: Life with Lupus
On the Road to a Cure writes:
I would like to share a lupus blog with you. It is called Mommy's Broken: Life with Lupus. It's written by a woman living with lupus named dizzydownward. She lives in Alabama. Here's a little bit about dizzydownward ... in her own words. "I am a mommy of two little girls. I was diagnosed with SLE, lupus, in October of 2005. Life hasn’t been the same since. It is difficult and annoying and some days I would rather not get out of bed, and some days I can’t get out of bed. I would trade nothing for my life and my family." If you have some time, swing by Mommy's Broken: Life with Lupus and say hi to dizzydownward. That's the lupus scoop from my end. Until next time, WickRead Full Story Read More and Discuss Lupus Blog Spotlight: Mommy's Broken: Life with Lupus
On the Road to a Cure writes:
I would like to share a lupus blog with you. It is called Mommy's Broken: Life with Lupus. It's written by a woman living with lupus named dizzydownward. She lives in Alabama. Here's a little bit about dizzydownward ... in her own words. "I am a mommy of two little girls. I was diagnosed with SLE, lupus, in October of 2005. Life hasn’t been the same since. It is difficult and annoying and some days I would rather not get out of bed, and some days I can’t get out of bed. I would trade nothing for my life and my family." If you have some time, swing by Mommy's Broken: Life with Lupus and say hi to dizzydownward. That's the lupus scoop from my end. Until next time, WickRead Full Story Read More and Discuss Lupus Blog Spotlight: Mommy's Broken: Life with Lupus
On the Road to a Cure writes:
I would like to share a lupus blog with you. It is called Mommy's Broken: Life with Lupus. It's written by a woman living with lupus named dizzydownward. She lives in Alabama. Here's a little bit about dizzydownward ... in her own words. "I am a mommy of two little girls. I was diagnosed with SLE, lupus, in October of 2005. Life hasn’t been the same since. It is difficult and annoying and some days I would rather not get out of bed, and some days I can’t get out of bed. I would trade nothing for my life and my family." If you have some time, swing by Mommy's Broken: Life with Lupus and say hi to dizzydownward. That's the lupus scoop from my end. Until next time, WickRead Full Story Read More and Discuss Find the Walk for Lupus Now That's Closest To You
On the Road to a Cure writes:
Read Full Story Read More and Discuss Find the Walk for Lupus Now That's Closest To You
On the Road to a Cure writes:
Read Full Story Read More and Discuss Find the Walk for Lupus Now That's Closest To You
On the Road to a Cure writes:
Read Full Story Read More and Discuss Find the Walk for Lupus Now That's Closest To You
On the Road to a Cure writes:
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