FPI

FTD Prevention Initiative

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About the FTD Prevention Initiative (FPI)

The FTD Prevention Initiative (FPI) was established in 2014 by Professor Jonathan Rohrer and Professor Adam Boxer as a means of sharing data to assist in the discovery of therapeutic treatments for frontotemporal dementia (FTD).

They understood that joining forces would result in more robust, reliable research into the natural history of FTD that could be used to plan clinical trials and better understand the disease.

Genetic FTD Initiative team photo

The FPI has three goals:

1

Create uniform standards of conduct for clinical trials in familial FTD syndromes.

2

Create an international database of familial FTD research participants who might be eligible for clinical trials.

3

Promote responsible data sharing within the context of observational studies and trials in familial FTD.

The FPI has been building momentum over the last few years into a world-renowned initiative, promoting clinical trials of new therapies with an initial focus on the three most common genetic causes of FTD: C9orf72, GRN, and MAPT. 

FPI Team Members

Consortia

  • Genetic FTD Initiative (GENFI) in Europe and Canada
  • ARTFL-LEFFTDS Longitudinal FTLD study (ALLFTD) in US and Canada
  • Dominantly Inherited Non-Alzheimer Dementias (DINAD) study in Australia
  • New Zealand Genetic FTD study (FTDGeNZ)
  • Research Dementia Latin America (ReDLat)
  • South East Asia FTD Consortium (SEA-FTD)
  • Longitudinal study of Early onset dementia And Family members (LEAF-FTD) in South Korea
  • Frontiers of Time course and Living specimen registry, and Disease modifying therapy development in Japanese FTLD patients (FTLD-J)
  • Indian FTD Consortium
  • Chinese Familial FTD Consortium

Cohort Leads

  • Jonathan Rohrer (GENFI)
  • Adam Boxer, Brad Boeve, Howie Rosen (ALLFTD)
  • Rebekah Ahmed (DINAD)
  • Brigid Ryan (FTDGeNZ)
  • Agustin Ibanez (ReDLat)
  • Adeline Su Ng Lyn (SEA-FTD)
  • Eun-Joo Kim (LEAF-FTD)
  • Manabu Ikeda (FTLD-J)
  • Suvarna Alladi (Indian FTD Consortium)
  • Qin Chen (Chinese Familial FTD Consortium)

Management

  • Lucy Chisman-Russell
  • Hilary Heuer

Infrastructure

  • Adam Staffaroni
  • Joe Hesse