Introducing our Registry Advisory Committee

 

DuchenneConnect Australia has gathered a diverse group of Duchenne experts and patient representatives to serve on the DuchenneConnect Australia Advisory Committee. The purpose of the committee is to ensure the registry is run in the best interests of the Duchenne community.

A major responsibility of the committee will be to review applications for access to registry data. Applications may be from companies planning clinical trials, or researchers wanting to learn more about Duchenne and its management. Data released always has identifying information removed from it, such as names and contact details, but we still need to vigilant that the data is used for the good of the community.

The advisory committee will also advise on the running of the registry and contribute to its strategic direction.

Current members of DuchenneConnect Australia's advisory committee are:

  • Associate Professor Kristi Jones – Paediatrician and Clinical Geneticist from The Children's Hospital at Westmead, NSW
  • Dr Christina Liang – Adult Neuromuscular Specialist at Royal North Shore Hospital, NSW
  • Kate Munro – Neurology Clinical Nurse Consultant at Lady Cilento Children's Hospital, QLD
  • Miriam Rodrigues – Genetic Counsellor and New Zealand NMD Registry Curator, NZ
  • Prof. Miranda Grounds – Internationally recognised Duchenne researcher, WA
  • Anthony Mariniello – Parent Representative and IT specialist, VIC
  • Klair Bayley – DuchenneConnect Australia coordinator and Parent Representative, WA
  • Dr Kristina Elvidge – DuchenneConnect Australia coordinator, VIC

We thank these individuals for taking time out of their busy schedules to support DuchenneConnect Australia and represent the interests of the Duchenne community.

Posted 10/25/2017