Informed Consent
Participation in this survey is completely voluntary. With surveys of this nature, there is always the risk for breach of privacy and confidentiality. The TBRS Community has implemented measures to decrease this risk, including only allowing trained staff to analyze results, requiring an application from researchers to access data, and only releasing de-identified data to researchers. With Participant consent, first name, contact, and location information will be released to TBRS Community volunteers known as Regional Coordinators for the purposes of connecting families and providing Participants with resources; consent to share this information is not required to participate in the larger study. The data obtained through this survey will be stored on a secure system. However, there is still a small risk associated with breach of privacy and confidentiality that participantss should be aware of. Re-identification is also possible; although researchers will be required to agree not to attempt to re-identify patients, and release information will be de-identified, this is still a possibility in a small, rare disease community that participants should be aware of.
You may withdraw from this study at any time by contacting our study team at kit@tbrsyndrome.org
Proceeding to fill out this survey serves as consent for participation in it.
Should participants have any questions regarding this process or the study, please contact:
Kit Church, Community and Research Engagement Manager, kit@tbrsyndrome.org