PatientsLikeMe ™

What is the Genetics Search Engine?

The PatientsLikeMe Genetics Search Engine is a new search engine for patients to find other patients with their exact gene mutation that causes their disease.  This is currently available in the ALS and Parkinsons communities.

Why would I want to use the Genetics Search Engine?

When two people have ALS, it doesn’t mean that they will have the same types of symptoms or disease progression.  By finding other patients with the same genetic mutation, you can learn from patients just like you.   You'll also be helping us know more about the cause and effects of ALS, which will advance research and aid in finding new treatments.

Where is my genetic mutation shown on my profile?

It is shown at the top of the page under the “Diagnosis History” section (found just below “Diagnosis”).

How do I get my genetic mutation status?

If you have been tested, you can ask your medical provider for your results.  Haven't been tested yet?  Just ask for the test.

I know I have a SOD1 mutation, but I don’t know more than that. Do I need to?

Identifying your exact SOD1 mutation (such as A4V or D90A) is powerful information for you, because you can finally ask the questions: “What is the best possible outcome, and how do I get there?” (PatientsLikeMe can help you with that, too).

To get your specific SOD1 mutation, call your medical provider and ask.  If you know that you have a SOD1 mutation, they will know the exact one.

How can I contact you with questions about my genetics?

If you are a blogger/reporter, see our press page.  Otherwise, you can contact our genetics team.

I've had 23andMe testing, but don't have my SNP results. How do I get them?

You can find and download your results here.

I would like to share my results with PatientsLikeMe. How do I upload my results?

After you have downloaded your results from 23andMe and saved them on your computer, you can upload the results to PatientsLikeMe here. On this page click "choose file" to select the file, and then press "upload" to have the file transferred to PatientsLikeMe's research team. This may take a few minutes.

Why would I want to share my 23andMe results with PatientsLikeMe?

As you know, PatientsLikeMe is currently doing research on Parkinson's disease.  We learn more every day about the disease by the information you share via your profile,  We now have the opportunity to combine your profile data with the genetic data shared on 23andMe.  To do this, we need patients like you to generously share your 23andMe genetic data here.

My 23andMe results say I have a 1.6% chance of getting Parkinson's, but I have Parkinson's. What happened?

23andMe tests for one genetic cause of Parkinson's, which may explain the lower percentage.  There are other genetic causes, in addition to environmental and possibly unknown causes. By participating in research studies  like 23andMe and PatientsLikeMe, you are helping researchers better understand your individual case, and others like you, to be able to more accurately answer this question in the future.

Why isn't PatientsLikeMe just getting this information directly from 23andMe?

For now, the simplest way to get this information to the PatientsLikeMe research team is for you share your genetic information by uploading it to PatientsLikeMe yourself. For legal reasons, we need your consent, and, in this case, it's more than just an "okay".  It's similar to why we don't have direct access to information in your medical records.  You have 100% control of your information and can choose whom you share it with! (For more on the right to share your data, see the Declaration of Health Data Rights, which PatientsLikeMe endorses).

What is your research team going to do with my information?

This is our first step into looking into how genetics might be useful in understanding how to help patients like you more effectively manage your disease. Our research team will use this information to improve the design and usability of our website, as well as explore how genetics works in the context of your disease as a whole.

This is a preliminary study -- where there are significant limitations in both the potential size of the study and SNP based genetic approaches.  Therefore, we realistically do not expect to discover or learn about causes or new treatments for Parkinson's disease through this initial effort. 

Note:  We will not share any information from your genome without your permission.

How might it help me as a patient?

As genetics become more meaningful in Parkinson's, then we will be able to use the information you share to build better tools to help people like you with Parkinson's, as well as those with other life-changing conditions.