Monday, April 11, 2016

LFA "Real Life with Lupus" Study: A chance to share your views on quality of life!

The LFA has created an opportunity for patients to share their thoughts on what life with lupus is REALLY like, through a current research study. While Phase I is no longer accepting participants, Phase II will be up and running in the near future. Thus, I wanted to share the good news about the LFA's valiant efforts to enable healthcare providers to better understand how the disease truly affects its patients.  

Here's the link for the study, and details from the LFA's website are below.

The Lupus Foundation of America, assisted by Evidera, a health outcomes research organization, is working to create a future tool that people with lupus can use to describe how their disease is affecting them. This tool may help healthcare providers better understand symptoms that are important to you. To build this tool we are conducting a research study to gain a better understanding of how people with lupus experience this disease.


How will this study take place? (NOTE: THIS PHASE IS CURRENTLY CLOSED, BUT STAY TUNED FOR PHASE II!

You will have one of two opportunities to participate.
  • The first opportunity consists of a 45–60 minute telephone interview. You will be asked to discuss your experience with lupus, lupus symptoms, and the impact it has on your daily life.
  • The second opportunity consists of a 60–90 minute in-person or telephone interview. In this interview, you will be asked to provide feedback on the developing tool or questionnaire.
The interview does not involve the use of any drugs or medical interventions.
Details about the interview process will be given to those who are eligible for the study and agree to participate.

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