Quick Questions July 2022 Results: Have you participated in an FTD research study?

large white question mark with black text asking Have you participated in an FTD research study?

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 FTD research study.

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.

Each month the FTD Disorders Registry will post a question related to FTD research. We hope you will submit your answers. All responses are anonymous.

Results from the previous month will be accessible at that time. Below are more details from July’s question.

RESULTS

The following charts and lists are based on 555 submissions.

120=in a study; 45=in more than 1 study; 23=in a study and finished 1 or more studies; 42=finished 1 study; 39=finished more than 1 study; 41=tried, but was not eligible; 24=tried, but did not get the info or responses I needed; 1=tried but had bad experience; 14=tried but decided too difficult; 33=no, symptoms burdensome or disease advanced; 157=never tried; 13=not interested; 3=blank

Question results:

21.6% Yes, I am currently in a study
8.1% Yes, I am currently in more than one study
4.1% Yes, I am currently in a study and have finished one or more studies
7.6% Yes, I have finished one study
7% Yes, I have finished more than one study
7.4% I tried, but I was not eligible
4.3% I tried, but did not get the information or responses I needed
0.2% I tried, but had a bad experience
2.5% I tried, but decided it was too difficult mentally, physically, or financially to do so
6% No, my symptoms are too burdensome and/or my disease is too far advanced
28.3% No, I never tried to enroll in a study
2.4% No, I am not interested in participating in research
0.5% Blank

Chart of respondents types: 104=persons diagnosed with FTD; 199=biological family members; 17=caregivers answer for themselves; 72=spouses answer for themselves; 162=Answering on behalf of FTD diagnosed person; 1=blank

Identify yourself results:

18.7% A person diagnosed with FTD
35.9% A biological family member
3% A caregiver, answering for myself
13.0% A spouse, answering for myself
29.2% I am answering on behalf of an FTD-diagnosed person (family member, caregiver, friend)
0.2% Blank

Gender results:

61% Female (339)
38.5% Male (213)
0.5% Prefer not to answer (3)