883 people answered the FTD Disorders Registry’s January Quick Question about their water sources. 474 reported that they have lived at least six months in an area where officials have questioned the safety of the drinking water or where their primary source of drinking water was well water.

101 of the respondents have lived in a place for more than six months where officials questioned the safety of the drinking water.

373 of the respondents have lived in a place for more than six months where their primary drinking water was from a well.

55 respondents have lived in a place for more than six months where they had both well water and officials have questioned the safety of the drinking water.

678 people answered the FTD Disorders Registry’s February Quick Question about the impact of FTD on employment. 370 reported that their job status was affected by an FTD diagnosis. Of these, 87 were the person diagnosed with an FTD disorder, and 283 were caregivers to someone with an FTD disorder.

903 people answered our March Quick Question about what kind of professional you initially sought out when your or your loved one’s symptoms first began. The results of this Quick Question are being used for an AFTD abstract. Once the abstract has been published, we’ll be sure to share the full results.

Answering Quick Questions significantly contributes to our understanding of FTD disorders. These quick responses offer a window into the lived experience of those with a connection to FTD. Each Quick Question answered represents a piece of the puzzle that informs approaches to care, advocacy efforts, and advancements in FTD research and management strategies.

You may have noticed that we did not send a Quick Question in April. This is because we were busy transitioning to our new FTD Disorders Registry platform. We would like to invite you to access your account on our new platform. 

Here’s how you can get started: 

Visit Our Website: Click here to visit the Welcome Page. You can access it through your web browser on any device. 

Reset Your Password: You will be directed to the login page. Since you are setting up your account on the new platform for the first time, please click on the "Reset Password" link below the login fields. 

Complete Your Profile: Once you're logged in, please take a moment to review and complete your profile. Click the Profile tab on the sidebar and update the information on each tab. You may be asked to fill in details such as your name and contact information. We value your privacy and identifying information will never be shared. 

Set Your Communication Preferences: By updating the Communication Preferences tab of your profile, you will be able to customize your Registry dashboard to highlight the resources that align with your interests.   

Register for Our Research Study: Some Registry participants are eligible to participate in our online research study, to share insights on lived experience with researchers. If you are interested, you will be asked to review and complete information, including your birthdate, to confirm your eligibility and decide if you wish to participate.  

Review Registry Activities: If you choose to join the Registry research study, your dashboard will regularly be updated with new surveys and activities to help researchers get a better understanding of your lived experience with FTD disorders. Each activity completed advances the science towards better treatments and an end to FTD disorders. 

Review Support Materials: We held a Walkthrough Webinar on May 15, 2024. Watch a replay of the webinar. A PDF of our new platform tutorial is also available here. 

If you have any questions, please contact the Registry Manager at manager@ftdregistry.org or by phone at 1-888-840-9980. You can also schedule a one-on-one walkthrough to address any questions or concerns here.  

807 people answered the FTD Disorders Registry’s May Quick Question about whether the person diagnosed with an FTD disorder received electroconvulsive therapy (ECT) during the diagnostic process. 761 reported that they did not receive ECT. 24 reported that they did. 22 of the respondents were unsure.

872 people answered the FTD Disorders Registry’s June Quick Question which asked how many languages do you speak.

688 respondents reported that they only speak one language. 135 respondents reported speaking two languages. 48 respondents reported speaking three or more languages. 

405 people answered the FTD Disorders Registry’s July Quick Question about participation in the new Registry platform. 

460 people answered the FTD Disorders Registry’s August Quick Question about whether they would be willing to participate in a remote research study asking about their symptoms and treatment prescribed for FTD. 

698 people answered the FTD Disorders Registry’s September Quick Question about whether they were a current caregiver for someone with an FTD disorder. 

552 people answered the FTD Disorders Registry’s October Quick Question about how much they felt participation in the Registry could contribute to advances in FTD research.

• Support for asymptomatic people with positive genetic test results
• Support for asymptomatic people considering genetic testing
• Support for partner of asymptomatic people with confirmed genetic risk