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Ed Forum 2016 SGL

Patients Treated in US: Participate in LLS Patient Registry Now!

Sep 6, 2018

The IWMF is one of the first two lymphoma organizations (the other is the CLL Society) that have been invited to participate in the Leukemia & Lymphoma Society’s (LLS’) new effort to collect medical data from electronic records for patients seen in the US. These data will then be used to look for commonalities and differences among patients. The good news is there is minimal effort required on your part to participate. (See below for brief instructions.)

This is a unique opportunity to utilize the power of “big WM data” in a way that requires very little effort on your part. (For the “veteran” WMers among you, this also is an opportunity to finally be in a position to realize the original vision for a patient database laid out by the late Ron Draftz several years ago!) 

The more WMers that participate, the stronger the data analysis and results will be! However, at this time, the registry is limited to anyone who has had medical care and/or tests conducted within the US, and whose provider of such services offers an electronic portal for viewing the patient’s records online.

Wouldn’t it be great to see answers, based on the electronic medical records of THOUSANDS of WM patients, to questions like these?

  • What percentage of diagnosed patients are “watch & wait”?
  • ​What is the most common first line treatment?
  • What percentage of relapsed patients are now treated with ibrutinib?
  • When ibrutinib is used, what is the dose prescribed?
  • Is testing for MYD88 and CXCR4 routinely done?

Click on this link to see a video that explains the idea better than just words.

For more details about the project, see: www.lls.org/article/the-iwmf-s-collaboration-with-lls-for-the-national-patient-registry-project.

Joining and participating is a very simple process. For step-by-step instructions (it’s only a few steps!) on how to sign up, go to www.lls.org/sites/default/files/National/USA/Pdf/Slides_Transcipts/NPR-SBS-IWMF_FINAL.pdf

Once you’ve properly registered and added your data source, the LLS will take care of the rest. It’s that simple! You will never have to update your data or do anything else again.

THE LLS PATIENT REGISTRY AND SECURITY

The LLS is committed to ensuring the privacy of all data to which they are provided access.

The process employed by the LLS to gather data for the Patient Registry uses an end-to-end encryption routine so that data that is transmitted cannot be opened without knowing the appropriate encryption key for doing so. In addition, the data that is collected and stored utilizes a sophisticated encryption method, rendering it unreadable without the appropriate “key”, which is considered to be the highest level of security possible. When the collected data is sent out for analysis, any identifying information is stripped off, so that the medical data that is distributed is completely de-identified and it’s not possible to connect the data with any particular person.

The LLS takes data security very seriously and fully understands the concerns of those participating in the registry. While realizing that no data can be 100% secure, the LLS makes every effort to ensure that the data it collects is as secure as is technically possible.

HOW TO PARTICIPATE

Signing up is quick and easy! Just follow these three simple steps and you will be done in a few minutes:

STEP 1: Create a LLS Community User Account by going to communityview.lls.org communityview.lls.org. Scroll to the bottom of the page and answer the appropriate questions (you’ll be asked to select your cancer type from two drop-down lists – the top level is “lymphoma”, and the next level you select would be WM).

STEP 2: You’ll get a confirming email that requires you to click on a specific link. Click on that link and you’ll see an entry box at the top of your home page that says “LLS Research Registry”.

STEP 3: Click on the text that says “Click Here to Set Up Sharing Your Medical Record,” and follow the instructions, making sure to “Add New Data Source” (your medical provider’s portal) at the very end of the process. That’s it – you’re done!

NOTE: if you don’t know whether your provider has a portal, contact your doctor’s office.

If you have questions about this process or need additional assistance, please don’t hesitate to contact the LLS at 1-844-696-7228 or PACT@LLS.ORG.

Please take these easy steps to join the LLS Patient Registry Project. It requires very little effort on your part but will help the entire WM community.

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