Muscular Dystrophy - "The Home of MDA"

MDA's Synergy with CINRG

Until now, neuromuscular groups worldwide have had no co-ordinated network or unified framework for clinical trials research. That meant that any treatment trials in the neuromuscular disorders were usually small, and in many cases, not performed in the most cost effective manner.

DMD is common the world over, and millions of dollars have been raised to promote research in DMD. However, much of the research has focused on the basic biology of the disease - research that was done in laboratories, away from the children themselves. As the ultimate goal of medical research is to affect a change in the course of the disease, there was a need to improve the communication and knowledge base of both families and clinicians, with the end result being an improvement in the quality of life for patients and their families. Without a co-ordinated group of researchers, these goals would be difficult to achieve.

CINRG

Zeth Angeles in the CINRG lab with Bev Eldridge and Julaine Florence from Washington University St.Louis USA

For these reasons, Eric Hoffman in the USA established the Cooperative International Neuromuscular Research Group (CINRG). CINRG’s vision is to be pre-eminent in the advancement of knowledge and development of effective treatments for people with Duchenne Muscular Dystrophy and related disorders. To achieve this, CINRG developed specialised equipment for muscle strength testing to be used in clinical trials and devised a structure where all participants were involved in sound scientific research in various centres around the world. Through the conduct of collaborative research and the use of state of the art technologies, it is likely that there will be the establishment of internationally recognized standards of care for people who suffer from neuromuscular diseases.

The ability of CINRG to involve a number of groups around the world in collaborative research will accelerate the introduction of treatments and innovations from the laboratory to the bedside more quickly. The Department of Neurology at the Royal Children’s Hospital (RCH) was invited to be part of CINRG last year and it has now purchased the equipment necessary. The initial training schedule for the evaluators at RCH is going ahead in the next week. This association with CINRG will give patients in Australia early access to leading edge therapies, when and if they become available. The MDA has been instrumental in the establishment of the CINRG collaboration by funding the study coordinator/evaluator position. Without funding from MDA, it would not be possible to establish a local CINRG Centre. We are extremely grateful to MDA for this support. This close association of CINRG and MDA, will give MDA an international profile as a supporter of the program and provide the opportunity for MDA to be more involved with other international lay organisations It is hoped that the association with CINRG will attract increased community support for funding in Australia by raising the profile of neuromuscular disease within the community. In the next few months, your child might be asked to participate in some training sessions with the equipment. Your child’s doctor will coordinate this with the evaluator at RCH.

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