FTDDR Exceeded Enrollment Predictions on First Day!

More than 2,300 persons affected by frontotemporal degeneration, including more than 400 diagnosed persons, have enrolled in the FTD Disorders Registry (FTDDR) since the data collection tool launched two years ago.

The FTDDR is an international Contact Registry and a North American Research Registry.

On that first day, March 28, 2017, the Registry broke all predictions and exceeded its two-week grand launch goal of 100 registrants in less than 24 hours. There were 136 people who signed up: 14 diagnosed persons, 50 biological family members, and 72 caregivers, spouses, and friends.

Of the day-one total, the number of people who enrolled for only the Contact Registry was 58. There were 78 people who completed additional registration to participate in research.

By the end of the first month, the FTDDR included more than 400 total registrants: 46 diagnosed persons, 159 biological family members, and 213 caregivers, spouses, and friends. Those who were enrolled only for the Contact Registry numbered 205, and an additional 213 had completed forms for the Research Registry.

Not only were goals broken the day the Registry launched, but also for the first-year anniversary. At its one-year milestone, the FTDDR had enrolled 1,215 people, surpassing its goal of 1,000 registrants. There were 619 signed up for the Contact Registry only and 596 who had also joined the Research Registry.

Now as the second anniversary approaches this Thursday, March 28, 2019, the Registry has more than 2,300 persons enrolled, including more than 400 diagnosed, more than 900 biological family members, as well as more than 900 caregivers, spouses, and friends.

The FTDDR includes Contact Registry enrollees from all 50 U.S. states and 28 countries, with the majority of international participants residing in Canada, Australia, and the United Kingdom. Research Registry enrollment is limited to the United States and certain Canadian provinces.

Frontotemporal dementia (FTD) is a fatal, degenerative brain disease that is a common cause of dementia in people under the age of 60. It is characterized by a progressive degeneration of the frontal portions of the brain, the areas responsible for language and behavior.

Through the course of the disease, persons affected by FTD may lose the ability to behave appropriately, make judgments, communicate, and carry out daily activities. Currently, there are no approved treatments or cures for FTD.

FTDDR is an online database that collects information about those affected by all types of frontotemporal degeneration, including: