What began four years ago with AFTD and the Bluefield Project as a shared idea for a tool in the movement to create therapies and find a cure for frontotemporal diseases has grown into a database that on its second enrollment anniversary numbers more than 2,000 participants.
Since our first goal-breaking day, the FTD Disorders Registry (FTDDR) has enrolled more than 1,000 people into the Contact Registry and another 1,000 have also been added to the Research Registry.
After Dr. Dianna Wheaton was named Registry Director in January 2016, efforts were targeted toward building an online registration system that would generate data to help scientists and researchers advance the science to create treatments and find a cure for FTD.
FTDDR gained its nonprofit 501(c)3 status in March 2016, and even before the registry was launched, Dr. Wheaton began presenting at scientific and caregiver conferences in the United States to share the vision, mission, and goals of the future registry.
The first official FTDDR presentation announcing the coming registry for persons affected by FTD diseases was given to caregivers and persons diagnosed on May 13, 2016, at the annual AFTD Education Conference in Minneapolis, MN.
The first scientific presentation came during the CurePSP 2016 International Research Symposium, held October 27-28, 2016, in Jersey City, NJ.
Also that year, on August 31, 2016, FTDDR expanded outreach beyond the United States when we attended and hosted a booth at the 10th International Conference on Frontotemporal Dementias held August 31 through September 2, 2016, in Munich, Germany.
The First Year
After launching on March 28, 2017, focus for the first year shifted to growing the Registry’s enrollment using multiple strategies for awareness and outreach. This included continuing to address conferences and support group meetings as well as developing relationships with researchers, clinicians, and study coordinators.
About six months after the Registry launched, the need for additional personnel to manage the database, validate submissions, and create website and social media content brought the first Registry Manager to the FTDDR team.
On our first anniversary in 2018, the Registry surpassed its goal of 1,000 registrants when total enrollment had reached 1,215 persons by the end of that day.
The Second Year
During the Registry’s second year, enrollment numbers have continued to grow at a similar rate as the first year. Stay tuned as we reveal the final data tomorrow!
FTDDR has expanded its team to keep pace with the continued enrollment growth and to increase outreach engagement activities. In August 2018 the Registry added a full-time IT System Administrator, and in January 2019 a full-time Communications Coordinator joined the team.
In September 2018 the Registry’s logo became registered with the U.S. Patent and Trademark Office, certifying the online non-downloadable software, the database, and the website as a tool for data collection and aggregation of information on neurological, psychiatric, and psychological disorders.
Also in the fall of 2018, FTDDR presented at its first international conferences.
The first international scientific conference at which Dr. Wheaton presented Registry information was the First PSP & CBD International Research Symposium, held October 25-26, 2018, at the Royal College of Physicians in London, England.
On November 12, 2018, Dr. Wheaton presented a Registry overview as part of the scientific program during the 11th International Conference on Frontotemporal Dementias at the International Convention Centre in Sydney, Australia. The next day, November 13, 2018, Dr. Wheaton also presented to caregivers and diagnosed persons during Carers Day.
- March 2015 - Founded by the AFTD & the Bluefield Project to Cure FTD
- January 2016 - Named first Registry Director
- March 2016 - Granted nonprofit 501(c)3 status
- May 2016 - Presented at first caregiver conference - 2016 AFTD Annual Education Conference, Minneapolis, MN
- August 2016 - Attended and hosted a booth at ICFTD 2016, Munich, Germany
- September 2016 - Presented at first scientific conference - CurePSP 2016 International Research Symposium, Jersey City, NJ
- March 28, 2017 - Launched to public with website and emails to more than 10,000; reached more than 100 registrants first day
- September 2017 - Added Registry Manager
- March 28, 2018 - First enrollment anniversary
- August 2018 - Added IT System Administrator
- September 2018 - Logo given registered approval
- Fall 2018 - Presented at first international conferences:
- January 2019 - Added Communications Coordinator
- March 28, 2019 - Second enrollment anniversary
Celebrate with Us! This week we are looking back at the history and highlights, statistics and successes as well as the future opportunities for advancing the science and moving toward finding treatments and a cure for persons affected by the full spectrum of FTD disorders.
Here is a list with links to all of the articles we posted about our Second Enrollment Anniversary:
Together we can help change the course of the disease and put an end to FTD.