635 people answered our question.
The top three answers were:

• Advancing research to benefit others at risk for impacted by FTD disorders (64%)
• Access to new treatments that aren’t available yet – (57.7%)
• Access to my study test results – (56.2%)

629 people answered the FTD Disorders Registry’s February Quick Question asking how often they feel socially isolated due to their or their loved one’s symptoms from a frontotemporal degeneration (FTD) disorder.

576 people answered the FTD Disorders Registry’s March Quick Question where we asked about what types of FTD-related research content respondents would find most valuable. The information will be used to help develop new content for our Registry dashboard, website, and printed materials.

548 participants responded to the FTD Disorders Registry’s April Quick Question on accessing respite care. Their input will help researchers better understand the need for enhanced caregiver support.

Receiving a diagnosis for an FTD disorder is often a long, confusing, and emotional process. No two journeys are exactly the same. A total of 673 participants responded, offering a powerful snapshot of the diverse and often complex diagnostic paths taken by those affected by an FTD disorder.

The most common evaluations included a neurological examination (78.45%) and a brain MRI (70.72%), followed closely by a neuropsychological evaluation (60.47%) and ...

Of the 503 respondents, an equal number of participants reported being satisfied (115) and dissatisfied (115). While 110 respondents selected a neutral response. 82 respondents reported that they were very dissatisfied with the medical care received, and 65 respondents reported that they were very satisfied with the care received.

528 participants responded to the FTD Disorders Registry’s July Quick Question on sleep difficulties.

Most respondents reported trouble sleeping at least sometimes, with 172 saying it happens often, 130 sometimes, 110 every night, 81 rarely, and only 32 never experiencing it.

528 participants responded to the FTD Disorders Registry’s August Quick Question on health insurance coverage.

The majority of respondents reported using Original Medicare (32.1%) or Medicare Advantage (21.3%).

Life with FTD is about so much more than medical symptoms. To better understand the impact of FTD disorders, our September Quick Question asked people in the community how their daily lives compared with peers of the same age who are not impacted by FTD. 563 people responded.

Respondents told us how they felt in six areas of life:

• Financial health
• Physical health
• Mental health
• Social connection
• Access to healthcare
• Ability to plan for the future

In October’s Quick Question, we asked whether families have considered long-term care options for the person with FTD, including memory care, assisted living, or skilled nursing. 383 people responded, providing meaningful insight into how care planning varies across disease stage, support resources, and family needs.

In the FTD Disorders Registry November Quick Question, we asked how FTD has affected physical abilities such as walking, balance, or coordination. 353 people responded, sharing insights on the physical challenges that can come with FTD.

In our most recent Quick Question, we asked participants and caregivers about gorging, a behavior that is seen in some forms of frontotemporal degeneration (FTD) but often misunderstood, even by healthcare providers. 

712 people responded and your responses are already helping us deepen scientific understanding of this symptom and will contribute directly to future research.