Is your child or teenager being treated for lupus nephritis?
The Lupus Foundation of America (LFA) Education & Research department is gathering information on the short- and long-term side effects and quality of life issues related to lupus nephritis medications -- for example, fertility concerns, hair loss, missing school, or increased risk of infections.
If you would be willing to complete a short survey about how lupus nephritis medications have affected your family and your child with lupus, please email Jenny Palter at palter@lupus.org. Once the survey has been posted online (by next week), Jenny will send you the link.
Your participation will be a great help in the LFA's efforts to assist pediatric rheumatologists in developing best treatment protocols for our young people with lupus nephritis.
Thank you!
Showing posts with label lupus survey. Show all posts
Showing posts with label lupus survey. Show all posts
October 27, 2009
Seeking Men with Lupus 65+ Years Old to Participate in a Survey
This is a follow-up to our recent posting where we asked people with lupus to participate in a survey. The response so far has been very good.
Now, BioVid has asked us to help them specifically recruit men with lupus who are 65+ years of age for this same survey. If you, or someone you know, may be a potential candidate, please follow the instructions below.
Through November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.
Anyone living in the United States is eligible to participate. BioVid is looking for men with lupus who are 65+ years of age to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.
If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.
Now, BioVid has asked us to help them specifically recruit men with lupus who are 65+ years of age for this same survey. If you, or someone you know, may be a potential candidate, please follow the instructions below.
Through November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.
Anyone living in the United States is eligible to participate. BioVid is looking for men with lupus who are 65+ years of age to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.
If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.
October 16, 2009
Seeking People with Lupus to Participate in a Survey
Between October 19 – November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.
Anyone living in the United States is eligible to participate. BioVid is looking for up to 100 people to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.
If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.
Anyone living in the United States is eligible to participate. BioVid is looking for up to 100 people to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.
If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.
June 12, 2009
Findings of International Survey Highlight the Significant Impact of Lupus on Patients' Lives
Results from an international online survey, carried out by UCB in conjunction with Lupus Europe and the Lupus Foundation of America, the two principal advocacy groups that represent people with lupus, were presented on June 12 during the EULAR (European League Against Rheumatism) congress in Copenhagen, Denmark, at a symposium called "Lupus - Considering the Future."Professor David Isenberg (Professor of Rheumatology at University College Hospital London), the symposium chairman, commented "Lupus is unpredictable, for some people the effects are more benign but for others, as the survey shows, the disease can have a huge detrimental impact. For all patients, lupus specialists should work via a multi-disciplinary approach tailoring care to the individual needs of the patient." He continued "Because lupus is a complex disease affecting multiple body systems, the development of effective drugs with a favourable risk:benefit profile is a major challenge – the new biological treatments seem to offer hope but we must wait until the results of ongoing trials are known."
About the survey ...
- The survey shows that lupus significantly impacts career, physical well-being and everyday living
- 81% of respondents report a negative impact of lupus on their career, with more than 28% not employed due to the disease
- 92% of respondents report a negative impact on their physical well being
- Fatigue, arthritis and muscle pain reported as most common symptoms
May 20, 2009
Your Input Requested ... Take This Quick 15 Minute Lupus Survey
In June, the European League Against Rheumatism (EULAR) will hold its annual scientific meeting in Copenhagen, Denmark. There will be a program specifically to discuss issues that impact people with lupus around the world. We would like to share what is most important to you with program organizers and presenters!
We invite you to complete the attached survey which has 24 questions and should take 10-15 minutes to complete. All answers are anonymous. A summary of the results may be shared as part of a campaign to raise awareness of lupus. We welcome and appreciate your input.
Take the survey.
And feel free to share this link with others.
We invite you to complete the attached survey which has 24 questions and should take 10-15 minutes to complete. All answers are anonymous. A summary of the results may be shared as part of a campaign to raise awareness of lupus. We welcome and appreciate your input.
Take the survey.
And feel free to share this link with others.
February 02, 2009
Seeking College Students With Autoimmune Diseases to Participate in a Survey
Update: We have just learned that the study is now full. We appreciate your interest and will let you know if other studies become available.
If you are a college student diagnosed with a(n) autoimmune related disease(s), then you may be eligible to participate in the Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases study. It's an anonymous online questionnaire (created by researchers at Indiana University Bloomington) asking about your health related academic problems, needs, perceptions, and experiences of living with an autoimmune related disease while attending college.
More than 100 autoimmune related diseases (i.e. lupus, ulcerative colitis, type 1 diabetes, multiple sclerosis, fibromyalgia, juvenile/rheumatoid arthritis, etc.) affect more than 23 million Americans. No data is available on the incidence, prevalence or needs of college students diagnosed with autoimmune related diseases.
To participate in the study, you must be:
If you are a college student diagnosed with a(n) autoimmune related disease(s), then you may be eligible to participate in the Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases study. It's an anonymous online questionnaire (created by researchers at Indiana University Bloomington) asking about your health related academic problems, needs, perceptions, and experiences of living with an autoimmune related disease while attending college.
More than 100 autoimmune related diseases (i.e. lupus, ulcerative colitis, type 1 diabetes, multiple sclerosis, fibromyalgia, juvenile/rheumatoid arthritis, etc.) affect more than 23 million Americans. No data is available on the incidence, prevalence or needs of college students diagnosed with autoimmune related diseases.
To participate in the study, you must be:
- 18 or older
- currently enrolled full time or part time in a 4-year institute of higher education, and
- diagnosed with one or more autoimmune related diseases by your health care provider.
September 16, 2008
Participate in Purdue University's Health Communication Survey
A few weeks ago, I shared with you that Purdue University is 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.
Purdue received a nice response after I posted their request (thanks to all of you), and they came back to me and asked if I wouldn't mind posting it again. It's their hope to try and reach those who were unable to participate the first time.
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 -- and regardless of whether you live in the United States, or around the world, 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,
Wick
Purdue received a nice response after I posted their request (thanks to all of you), and they came back to me and asked if I wouldn't mind posting it again. It's their hope to try and reach those who were unable to participate the first time.
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 -- and regardless of whether you live in the United States, or around the world, 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,
Wick
September 05, 2008
Lupus Foundation of America Seeking Feedback from People with Lupus
The Lupus Foundation of America (LFA) is working to improve the way in which we serve people with lupus. We would appreciate 20 minutes of your time so that we can learn the issues most important to you, and receive your views on how well LFA is meeting your needs.
The deadline for taking the survey is Thursday, September 11, 2008.
http://donate.lupus.org/2008survey
Thank you for helping the LFA.
The deadline for taking the survey is Thursday, September 11, 2008.
http://donate.lupus.org/2008survey
Thank you for helping the LFA.
August 25, 2008
Interested in Participating in a Health Communication Survey?
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. You can take the survey whether you live in the United States, or around the world.
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,
Wick
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. You can take the survey whether you live in the United States, or around the world.
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,
Wick
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