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Table 12 Industry enquiries to the CTSR (PR: Patient Registries)

From: The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases

Company

Date

Type

Disease

Registry

Geographic coverage

Prosensa

July 2009

Feasibility enquiry

DMD

CTSR & PR

Europe, USA, Canada

Acceleron

September 2009

Feasibility enquiry

FSHD

CTSR only

Worldwide

Trophos

March 2010

Feasibility enquiry

SMA

CTSR & PR

Europe

Acceleron

June 2010

Feasibility enquiry

DMD

CTSR & PR

Europe, USA, Canada, Japan

Santhera

December 2010

Feasibility enquiry

DMD

CTSR & PR

Europe, USA, Canada

Company X

November 2011

Feasibility enquiry (refinement and update)

DMD

CTSR only

Worldwide

Ultragenyx

November 2012

Feasibility enquiry

GNE myopathy

CTSR only

Worldwide

Eli Lilly

May 2013

Feasibility enquiry

DMD

CTSR & PR

Worldwide