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MDA's Sponsorship of CINRG


 

The Cooperative International Neuromuscular Research Group, (CINRG), was formed in 1999 as the clinical research arm of the Duchenne Muscular Dystrophy Research Center (DMDRC) and the Research Center for Genetic Medicine at the Children’s National Medical Center (CNMC).

The primary goal of the CINRG research program is to provide a continuum of well-designed clinical trials in a geographically dispersed network so that they are available to every child with Duchenne muscular dystrophy (DMD). Currently CINRG’s network expands across 23 clinical trial sites in 10 countries.

CINRG’s vision is to be pre-eminent in the advancement of knowledge and development of effective treatments for people with DMD.

The Department of Neurology at the Royal Children’s Hospital (RCH) has been an active CINRG clinical trial site for the last four years. The MDA has been instrumental in the establishment of the CINRG collaboration by funding the study coordinator position and research physiotherapists involved in strength testing for the CINRG studies. Without funding from MDA it would not have been possible for the RCH to establish a local CINRG Centre. We are extremely grateful to MDA for this support.

There are three currently active CINRG trials at RCH. They are:

  • Prednisone (high-dose vs daily) in Duchenne muscular dystrophy;
  • The UCD (University of California, Davis campus) Longitudinal study of the relationship between impairment, activity limitation, participation and quality of life in persons with confirmed Duchenne muscular dystrophy;  and
  • Clinical trial of coenzymeQ10 and prednisone in Duchenne muscular dystrophy

Prednisone (high-dose vs daily) in Duchenne muscular dystrophy study is in its final stages and close to completion. This study involved ambulant children aged 4-10 years with an established diagnosis of DMD. The aim of the study was to help determine whether a high-dose weekly course of prednisone (also known as prednisolone) therapy is safer than and at least as effective as daily therapy. Participants were placed into groups so that the effect of the drug could be evaluated by a randomized, double-blinded placebo controlled study. The participants were evaluated for muscle strength, timed function tests, functional grades for arms and legs, and pulmonary function tests at variable intervals for 12 months.

Longitudinal study of the relationship between impairment, activity limitation, participation and quality of life in persons with confirmed Duchenne muscular dystrophy, involves establishing the largest long-term assessment of people with DMD between the ages of 2 and 30 years.

This is a five year study collecting information from boys and men with DMD and their families. Information to be collected will include studies of patient’s physical abilities, medical problems and use of healthcare services. A second goal is to look for an association between modifying genes (which contain instructions for how the body works) and response to treatment of DMD.  Participants in this study will undergo strength and lung function testing at variable intervals during the 5 year study.

Clinical Trial of coenzymeQ10 and prednisone in Duchenne muscular dystrophy. This study is being initiated at RCH in mid-2007and is currently recruiting participants.
This study will help determine if CoQ10 and prednisone, alone and in combination, decrease the decline in cardiopulmonary and skeletal muscle function that occurs in the wheelchair phase of DMD. Participants in this study will be wheelchair confined males aged 10 to 18 years with DMD.

Participants are evaluated at variable intervals. Assessments will involve efficiency and safety assessments and monitoring for a 12 monthly period.

Involvement in CINRG and other trials offers families a chance to be at the cutting edge of research into DMD. We hope that effective new treatments for DMD will be identified through these studies. These studies have the potential to benefit all boys with DMD. The RCH commitment to CINRG and other research networks reflects our desire to bring the very best and most current medical treatment to all of our patients.

Please do not hesitate to contact Ms Daniella Villano, MDA - Neuromuscular Nurse Coordinator at RCH, with any questions regarding CINRG and our other research interests. Dani can be contacted on Ph: (03) 9345 4633 or email: daniella.villano@rch.org.au

Additional Information on CINRG here...

 


 

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