Wednesday, May 20, 2015

The Lupus Research Study - Pfizer, LRI, and 23andMe. Exploring the role of genetics and lupus!

It's been survey central here at Despite Lupus headquarters!

I've recently participated in several lupus surveys, one of which led to a video interview for a study about photosensitivity and lupus, and another which prompted me to join a lupus research study to help better understand genetics and lupus. I had planned to simply pass along the genetics study information in a post, but I thought I needed to know what was involved before recommended it. In doing so, I got hooked! So now I'm doing the study, and would welcome some company!

Image result for 23andme lupusThe study is a joint effort between Pfizer, the Lupus Research Institute (LRI), and 23andMe, the leading personal genetics company.

Here's 23 andMe's official launch statement:

The company is [officially] launching The Lupus Research Study in collaboration with Pfizer and the Lupus Research Institute to enroll 5,000 individuals with lupus for a study to better understand the underlying genetic causes of lupus such as the onset, progression, severity and response to treatments for lupus.  

Genetics has started to play an increasingly important role in medicine to understand disease characteristics and to develop new medicines. With your participation, we could provide insight as to why some people are more likely to get lupus, what triggers the onset of symptoms and why people respond differently to treatment options and drugs.

We want to find a better way to treat lupus through genetics. By partnering with Pfizer (a pharmaceutical company developing drugs to treat lupus) on this study, we will work together to learn how your genes and your environment could play role in lupus drug treatment, and how they relate to lupus risk and progression. This will be the single largest genetics study of lupus anywhere in the world.

Our research objective is to understand the genetic associations found between lupus patients' DNA and their disease, and apply this understanding to Pfizer's drug development efforts.




Here's all of the information you need, and the initial requirements are as follows:

In order to participate in the first study within the lupus community, you must meet all of the following criteria:
  1. You've been diagnosed with lupus by a qualified physician.
  2. You consent to have 23andMe (via a partner) contact your physician to obtain your medical records.
  3. You're willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
  4. You are at least 6 years old (minors under 18 require parental consent to enroll).
  5. You have access to the Internet.
  6. You reside in the United States.

You'll then be asked to answer some additional questions to determine if you're eligible to participate. The study itself will require an hour or two of your time, and includes a saliva test (an idea to which I'm warming up!), and some surveys. Check out their website here, and you can also read an article about the study.

Image result for 23andme lupus

2 comments:

Anonymous said...

Wow! Thanks so much for sharing this information! I had not heard about this study, so I'm glad I read your blog. :-)
Katherine

Sara Gorman said...

So glad to hear it. Check it out and let me know if you do it!