Of the 817 responses to last month’s Quick Question, nearly half (400) indicated that the FTD-diagnosed person lives or lived with their spouse and children, if any. The next most frequent choice was the person diagnosed living in a care facility (191).

In December, the FTD Disorders Registry asked “With Whom Does/Did the FTD-diagnosed Person Live? The majority who replied — 660 (81%) — were spouses (346) and biological family members (314).

Write-in answers to the question included similar responses as those offered in the multiple-choice options. Several people named the specific relative or friend with whom the FTD-diagnosed person lives/lived. There were 15 people who indicated that the FTD-diagnosed person had lived in multiple places during the course of their disease.

The age range most reported for when the first frontotemporal degeneration (FTD) symptom appeared was between 55 and 59 years (158 people), according to those who answered the FTD Disorders Registry’s November 2022 poll. This was closely followed by 60-64 (145 people) and 50-54 (132 people).

There were 769 people who answered our November question: At what age did the FTD-diagnosed person show their first symptom? The majority who replied were family members (39% biological relatives and 47% spouses).

Responses were received from people in 25 countries around the world with the most coming from the United States (676) followed by Canada (42), and Australia (15).

The age range that most people received a diagnosis of frontotemporal degeneration (FTD) was between 60 and 64 years (182 people), according to those who responded to the FTD Disorders Registry’s October 2022 poll. This was closely followed by 55-59 (169 people) and 65-69 (166 people).

There were 857 people who answered our October question: At what age were you (or your loved one) diagnosed with FTD? The majority who replied were family members (40% biological relatives and 42% spouses).

There continues to be almost twice as many women as men who answer our Quick Question survey questions (October 2022 = 36% men and 61% women). However, when looking at the responses from spouses answering on behalf of their FTD-diagnosed loved one, the gender demographics are much closer with 43% males (153) and 54% females (194).

More than 950 people said “Yes” to the FTD Disorder Registry’s September 2022 Quick Question. There were 1,381 people who responded to the monthly poll. Of those, 101 people said they would not do genetic testing, and 224 indicated that it would depend on various reasons as to whether they would or would not choose to be tested.

People were offered the main options of “Yes,” “No,” and “It depends on.” After making this selection, they then picked the reason(s) for this choice. Multiple responses were allowed, including write-in answers for “It depends on.”

Of those who responded “Yes,” the number one reason was to “know my family’s risk (633).

According to the August 2022 Quick Questions survey, the No. 1 reason people participate in FTD research is because they want to find treatments and a cure for frontotemporal degeneration (FTD).

The question was answered by 633 people. There were 533 people who shared reasons they will participate in FTD research, and 100 people told us why they would not participate.

People were not asked if they had enrolled in a study. However, several indicated through their write-in answers that they were current or past research participants.

Almost half of the 555 people who responded to our July 2022 Quick Questions survey reported that they are in or have participated in at least one frontotemporal degeneration (FTD) research study.

Some 269 people (48.5%) indicated that they have participated in at least one FTD study. Another 203 (36.5%) noted they had not participated, and 80 people (14.5%) tried but did not enroll for various reasons.

While 120 people are currently enrolled in one study, 107 others are multi-study participants.

Of those who tried to participate in research, 41 were not eligible and 14 decided the study would be too challenging for mental, physical, or financial reasons. Additionally, 24 people wanted to enroll but did not get the information or responses they needed to proceed with the process. Only one person indicated that they had a bad experience while attempting to join a research study.

Surprisingly, more than a quarter of those who responded (157) said that they had never tried to enroll in a study, and 13 people do not want to participate in FTD research.

More than 850 people used our anonymous form to answer the first Quick Question: Have you tried to get genetic testing for FTD over the last 3 years?

The FTD Disorders Registry kicked off its monthly Quick Questions campaign on June 28, 2022. Unexpectedly, we also received replies to the question via our website chat tool, emails, and replies on social media.

“We were incredibly excited by the number of responses that we received in such a short time,” said Registry Director Dianna Wheaton, MS, Ph.D., CHES.

The greatest number of respondents (48%) have not tried to get genetic testing done within the past three years, while 4% noted that they had been tested more than three years ago.

There were 24.2% who indicated that they had been tested over the last three years and that they had it done by one of their doctors (9.7%), by using a free program (3.1%), or through participation in a research study (21.4%).

Some people (6.4%) have decided not to be tested, and others tried to be tested but were not able to do so (4.1%). A small percentage (1.8%) chose not to be tested after they underwent genetic counseling.