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 is the DigitalMe Ignite program closing?
Unfortunately, we have been unable to secure the resources needed to keep the pilot program running. As a result, we have to officially end the DigitalMe Ignite program and stop blood collections.
When will the DigitalMe Ignite program officially close?
DigitalMe Ignite program has officially closed as of 11/18/2019.
Is it possible that DigitalMe or some iteration of the program will start up again?
At the moment we are unsure what the future will hold for DigitalMe, but we hope to continue analyzing the data we currently have in hand.
Who do I contact for more information now that the program has closed?
Please feel free to reach out to the DigitalMe Advisors, Lauren Kaplan or Hannah Chory by emailing email@example.com with any questions.
Can I withdraw from the program?
Yes, you may do so until 12/20/2019 by reaching out to firstname.lastname@example.org. As part of the withdrawal process you’ll be asked whether you’d like to have your unused samples destroyed and whether you’d like to contribute your unused sample(s) and DigitalMe survey data to further research. Per the informed consent for this program, any data that has already been used for research cannot be removed.
What happens if I do nothing?
If you take no action, after 12/20/2019, your unused samples and DigitalMe survey data will remain in the program to be used for future research.
Will we receive any results or findings? If yes, what can we expect?
At this time, we cannot commit to providing results. We’ll keep you as informed as we are able.
Does this impact PatientsLikeMe in any way?
The short answer is no, PatientsLikeMe.com will not be impacted. In fact, PatientsLikeMe is about to grow and is going to redouble its efforts in helping patients evaluate and manage their treatments and to build better tools to help you manage and share your experience with complex disease. There is a clear plan to invest in both growing the community and offering new services to drive that forward. We look forward to sharing these plans as they firm up.
What is the status of the samples I’ve provided?
A large number of “unused” samples are currently safely secured in our biobank, Precision For Medicine. Unused means that they have not been analyzed and we have no data that has come from the samples. However, there are about 1500 samples that have been analyzed and are now being used as part of our research data set.
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 unless you choose to withdraw and have them destroyed.
I’d like to have my remaining samples destroyed, how can I do that?
You can do that by sending an email to email@example.com and letting us know that you would like to withdraw from the program and note that you’d like to have your unused samples destroyed. Per the informed consent for this program, any data from blood that has been analyzed cannot be removed.
How are my samples destroyed?
A steam sterilization process destroys the biological composition of the sample. This process is conducted in compliance with the necessary regulations.
How long will it take to destroy my sample?
We plan to process these as quickly as possible, but you should receive confirmation via email within 4-6 weeks.
Will I receive confirmation that my sample was destroyed?
Yes, you will receive a confirmation email from us within 4-6 weeks.
DATA & PRIVACY:
I would like revoke my consent to have any of my DigitalMe survey data used for future research, how can I do that?
You can do that by emailing firstname.lastname@example.org to let us know that you’d like to withdraw and that you don’t want us to use your DigitalMe survey data for future research. Per the informed consent for this program, any data that has already been used for research cannot be removed.
How will my privacy be protected after the program closes?
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