Dear Realm of Caring families,
This letter is in regards to the epilepsy research registry we undertook in 2015.
I want to inform you RoC is no longer engaged in research with mdlogix and has not been since the end of 2015. Since we terminated our relationship, mdlogix continues to solicit our families despite our repeated requests through legal counsel asking them to cease and desist. Additionally, RoC has been prevented from retrieving participant contacts and registry data since October 2015. Contractually, RoC owns the data and should be free to publish results as we deem appropriate to advance our mission. With mdlogix obstructing our access to your data, they are preventing our analysis and potential publication. Not only that, mdlogix appears to be utilizing your data in violation of our contract to advance its own self-interest. We created an easy way for you to voice your concern to mdlogix and withdraw your consent to let them use your data.
RoC hired an attorney in an attempt to resolve this amicably. Regrettably, despite our best efforts, it appears such a solution will not happen. As the steward over the funds we work so hard to raise, and you work so hard to donate, I refuse to spend large amounts of financial resources on litigation when those dollars should be used for suffering families in desperate need of new options and our help. If you are as angry as I am, please take a few minutes to send mdlogix a letter to tell them how you feel about the way they have treated the organization that serves you and remove your consent allowing them to use your data.
The situation really is unfortunate. We’ve made the best of it though, by immediately beginning work on a new, improved, IRB-approved research registry with Johns Hopkins University and the University of Pennsylvania. The new registry allows us to collect data on a variety of conditions and symptoms, including cancer, epilepsy, behavioral disorders, and many more. Whether you are using cannabis therapy or not, you can participate in this groundbreaking research. Here is the NEW, CURRENT version of the registry with a reputable research institution, Johns Hopkins University, in which you can participate:
Thank you for continually allowing us to be your trusted resource. We are looking forward to knocking this one out of the park, and not only furthering the science and discovering where the clinical research should aim but allowing you to tell your story through data collection. With your help, we will continue legitimizing cannabis as medicine.
- Here is where you can quickly retract your consent to the mdlogix registry and ask them to do the right thing by RoC.
- Here is your new and improved research portal with Johns Hopkins, a reputable institution: https://theroc.us/orr
Thank you for allowing me to continue to look out for your best interest,
Heather Jackson, CEO