Available Data
The FPI has created an integrated data platform that enables the consolidation and harmonization of clinical data collected within genetic FTD cohorts across the globe. This tool houses the largest known genetic FTD database, and has the potential to transform and accelerate FTD-related academic research and clinical studies to expedite therapeutic development.
Access to the harmonized dataset can be requested by industry and academic investigators. For academic requests, the harmonized dataset is currently only available to FPI investigators and their study team.
Data Facts
The FPI integrated data platform contains a compiled dataset that includes patient demographic and clinical information that is collected and harmonized across multiple FPI consortia, termed the FPI Minimum Data Set (FPI-MDS). The FPI data curation process consists of four steps: data acquisition, data mapping, data ingestion and cleaning, and data harmonization. All data in the FPI-MDS is deidentified, secure, and third-party certified.
About the FPI-MDS
Which consortia currently contribute data to the FPI-MDS?
The FPI-MDS currently consists of harmonized data that originated from the ALLFTD and GENFI studies. FPI is actively working to include and harmonize data from other FPI-affiliated consortia.
What type of data is included in the FPI-MDS?
The FPI-MDS includes over 250 variables comprised of standardized demographic, clinical, cognitive, MRI, and biomarker data consistently collected across participating study sites.
Which study participants are represented in the FPI-MDS?
FPI-MDS data was collected from more than 4,800 clinical visits conducted on over 1,700 study participants. The FPI-MDS includes information captured from both current and historic study participants categorized as symptomatic or asymptomatic individuals carrying mutations in FTD-causing genes, or family member controls.
Learn More
Contact Us to learn more about the following:
- How to request access to the FPI-MDS data
- How to access the FPI-MDS Data Dictionary
- How to collect the FPI-MDS variables in your FTD cohort