ALS-FTD-Q around the globe

The validation study of the ALS-FTD-Q in Japan is going well. Our colleagues, Prof. K. Nakashima and Dr. Y. Watanabe from Tottori University, have already included 50 participants in their study. Furthermore, the study will start in 14 other Japanese hospitals in the near future.

Left picture: f.l.t.r Emma Beeldman, Joost Raaphorst, Mieko Ogino, Yasuhiro Watanabe, Mitsutaka Ebiki, Rosanne Govaarts and Hiroshi Ogino.
Right picture: f.l.t.r. Rosanne Govaarts, Emma Beeldman, Ole Gredaland Joost Raaphorst

The ALS-FTD-Q has recently been translated to Danish. Our Danish colleague, Dr. O. Gredal, from the Rehabilitation Centre for Neuromuscular Diseases in Copenhagen, is planning on including the questionnaire in a PET study in ALS.

Longitudinal validation

In March 2014 we have initiated the the longitudinal validation study of the ALS-FTD-Q at our hospital in Amsterdam. At the outpatient clinic of the department of Rehabilitation Medicine proxies of patients with ALS, progressive spinal muscular atrophy (PSMA) and primary lateral sclerosis (PLS) are asked to fill out the ALS-FTD-Q every three months. The letter fluency test, the Hospital Anxiety and Depression Scale (HADS) and ALSFRS-R are administered to the patient.
The inclusion rate for this study has recently been doubled as another site (multidisciplinary ALS team of the Radboud University Medical Centre, Nijmegen; dr. Jan Groothuis and dr. Joost Raaphorst) started recruiting the 1st of September 2015. Yet another site (multidisciplinary ALS team at the the Rehabilitation Centre ‘Het Roessingh’, Enschede, dr. Reinout van Vliet) will start recruiting the 1st of November 2015. 

Aim of the study:
- Demonstrate responsiveness of ALS-FTD-Q (increase of behavioural changes during the disease course)


Last update: October 21th, 2015

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