Calgary FSHD Clinical Innovation HUB

Budget

C$200,000

Lay Abstract

Test period:

One Year

Investigator:

Dr. Lawrence Korngut, University of Calgary

Lay abstract

The really good news for FSHD patients is that cures are coming – and fast.

And FSHD Canada’s mouse tests have been successful in discovering compounds that can get our muscles back – especially in combination with a therapy that stops the disease.

So now we need to make sure that Canadians get access to these new therapies as fast as possible once they are approved in the US. FSHD Canada created Project Mercury to make sure Canadians don’t fall behind. This project is well on track – and has now become international in scope.

A core part of Project Mercury is the FSHD Clinical Innovation HUB. The HUB will be based in Calgary – under the leadership of Dr. Lawrence Korngut at the University of Calgary.

The purpose of the HUB is to use Dr. Korngut’s clinic as a model to create other FSHD Clinics in Canada – and globally. Dr. Korngut will share his operating procedures, training systems, budget templates and so on.

The HUB will also be used to test new clinical trial technologies – such as wearable devices. These devices will make FSHD clinical trials much more accessible for FSHD patients living in remote locations.

The cost of starting up the HUB is C$200,000. This is a one-year project which will cover project planning, patient recruitment, project management, stakeholder engagement and licensing fees for the technology platforms we will be using.

The Stollery Foundation has generously donated C$200,000 to FSHD Canada to support the HUB start-up.