PRESS & NEWS
Quick Question July 2024 Result: Have you joined the new Registry platform?
405 people answered the FTD Disorders Registry’s July Quick Question about participation in the new Registry platform.
156 respondents have not joined the new Registry platform. 137 have joined the platform. 112 respondents were unsure about their participation in the Registry.
Of the 137 respondents who have joined the new platform, 101 have not linked their electronic medical records (EMR). 21 have linked their EMR to the new Registry platform, and 11 respondents were unsure whether their EMR has been linked.
When asked about the reasons for not linking their EMR, lack of awareness is the biggest barrier with over 25% not knowing that they could link their EMR to the Registry. Technical knowledge is also a significant issue, with about 16% not knowing how to link records and 10% not knowing where to do this within the platform. Privacy and security concerns are present but not dominant; only 7% of respondents reported being concerned about security.
Other factors have also played a role in respondents not linking their EMR to the Registry. Some respondents face access issues, either due to not being the primary caregiver or not having electronic records. Geographical factors may play a role, with some international respondents unsure if linking would be helpful. Technical issues during the linking process have also deterred some users.
Demographics
Of the 405 respondents, 224 were female. 179 were male. One respondent noted that they preferred not to answer and one did not provide an answer.
The largest group of respondents (36.79%) were spouses, answering on behalf of a person diagnosed with an FTD disorder, and the second largest group (20.99%) were participants who have been diagnosed with an FTD disorder answering for themselves.
The FTD Disorders Registry’s monthly Quick Question provides invaluable insights into the lived experience of those with a connection to FTD. By participating, individuals contribute to a deeper understanding of FTD, helping to drive research and fostering advancements in treatment and support.
To join the FTD Disorders Registry, please visit our website. Anyone with a connection to FTD disorders is welcome to join.
For those who participate in the Registry’s research study, connecting an EMR to the Registry dashboard provides researchers with comprehensive and accurate patient information, including medical history, treatment outcomes, and longitudinal data without sharing any identifying information from individual patients. Access to this information allows for a more thorough understanding of FTD disorders, advancing the science to develop new treatments and improved patient outcomes.
To learn more about how to connect an EMR to the Registry, please review our step-by-step tutorial.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.