Dear DTRF Desmoid Tumor Patient Registry Participants,
Thank you for your ongoing contributions to the DTRF Patient Registry. We are excited to tell you that NORD®, the host of the registry, has upgraded to a new version of the IAMRARE® platform. We have been working with NORD to migrate the DTRF Patient Registry to the new platform, and this process is nearing completion. The data you have already contributed to the Registry will be transferred to this new platform automatically. Once the migration process is complete, you will receive an email that will describe the steps you need to take to access the new platform.
To complete the migration, we will need to pause access to our registry beginning on February 10th, 2025. You will not be able to access the platform or complete surveys during this time.
As part of migration, we have updated our study documents including the Informed Consent document you previously signed. These are the changes that we wish to make you aware of:
- We are now more specific about different levels of data use requests that the DTRF Patient Registry may receive from researchers. The levels are based on how much and how detailed the information needs to be for them to answer their research question(s). We also provide an explanation for the process involved in determining whether the requests should be approved and what level of data should be provided. The details of this are explained in the section called How We Use the Data.
- We indicate in the section called If You Live Outside the United States that the servers that store the data are now located in Canada.
- During registration for the platform, we are collecting information to be able to create a Global Unique Identifier for each participant. The goal of this identifier is to allow the combination of different data sets without having to share your name or other personal information.
- The original consent that you signed stated that if you were to choose to withdraw from the study, then the policy was that the participant’s information would not be used for new research. This has been changed in the new consent and is included in the section on Voluntary Participation, Withdrawal and Alternative to Participating. The main difference is that you now have a choice: 1) you withdraw from the study and you will not provide any new information, but the information already included can be used for ongoing and new research, or 2) you withdraw from the study and request that your information is removed from the platform and not used in new research. If you wish to withdraw your consent, please reach out to us and inform us of which option you are choosing.
We have attached the new consent form to this letter for you to review. If you would like to speak with someone from our team to answer any questions, please let us know at registry@dtrf.org. If you wish to reconsider your willingness to take part in the study, please let us know at registry@dtrf.org.
Please feel free to reach out with any study-related questions or to discuss any concerns.
Sincerely,
The Desmoid Tumor Research Foundation Team
DTRF Patient Registry Consent Forms:
Adult Consent for Study Participants over age 18
