The pilot phase of DigitalMe officially closed on November 18, 2019. Please do not hesitate to contact us here with any other questions, requests, or feedback — research is a partnership!
Why did the DigitalMe Ignite program close?
Unfortunately, we were unable to secure the resources needed to keep the pilot program running. As a result, we had to officially end the DigitalMe Ignite program.
When did the DigitalMe Ignite program officially close?
DigitalMe Ignite program officially closed on 11/18/2019.
Is it possible that DigitalMe or some iteration of the program will start up again?
We are unsure what the future will hold for DigitalMe, but we hope to continue analyzing the data we currently have.
Who do I contact for more information now that the program has closed?
Can I still withdraw from the program?
No, unfortunately the program is now closed, and no further changes can be made to the data sets.
Will we receive any raw data, results or findings?
At this time, we cannot commit to providing results or raw data files. We’ll keep you as informed as we are able.
Does this impact PatientsLikeMe in any way?
The short answer is no. In fact, PatientsLikeMe is growing, and has redoubled its efforts in helping patients. We are working on developing better tools to help patients evaluate and manage their treatments, as well as share their experiences with complex disease. We are investing in both growing the community and offering new services to drive this mission forward.
What is the status of the samples I’ve provided?
There are two potential statuses:
1) Unused: This means that the samples are safely secured in our biobank, Precision For Medicine. Unused also means that these samples have not been analyzed and we have no data from them.
2) Analyzed: This means that the samples have been sent to our partners for analysis and we’ve received data derived from said samples. The data from analyzed samples is now being used as part of our research data set.
Please be aware that these statuses are not mutually exclusive, as many of our participants have provided more than one blood sample.
What will happen to my unused blood/samples?
Your unused samples will remain with PatientsLikeMe and will be held at our biobank for use in future research.
I’d like to have my remaining samples/survey data destroyed, can I still do that?
No, unfortunately the program is now closed, and we have locked our data set. For reference, the program closed on 11/18/2019. All participants were provided a grace period to withdraw and update their preferences for managing DigitalMe data and samples by 12/20/2019. No further changes can be made.
How will my privacy be protected now that the program is closed?
I withdrew before 12/20/19, but have not yet received confirmation that my samples were destroyed and that my data removed from use for future research:
You should expect your confirmation email to arrive within 4-6 weeks from the date of your request.
If you made your request after 12/20/19, we unfortunately, can no longer accommodate data removal and sample destruction.