Posts by Bob Reinecker

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

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

673 participants responded to the FTD 503 participants responded to the FTD Disorders Registry’s June Quick Question on how satisfied they are with the overall quality of medical care received for FTD. The results varied greatly.

673 participants responded to the FTD Disorders Registry’s May Quick Question on their diagnosis journey.

548 participants responded to the FTD Disorders Registry’s April Quick Question on accessing respite care.

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.

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.

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%)

500 people answered the FTD Disorders Registry’s December Quick Question about what type of non-medical interventions have made a positive difference for the person diagnosed with an FTD Disorder.

The FTD Disorders Registry’s November Quick Question received 396 responses about the type of support families with genetic FTD need.