Share4Rare Webinar IV: “Creating the infrastructure for translational research”

Lessons learned from TREAT-NMD

On Tuesday December 11, 7pm CET, Share4Rare hosts a webinar that will describe the objectives, goals and achievements of the specialist network TREAT-NMD. Established in the neuromuscular field TREAT-NMD is a collaborative network which provides tools and an infrastructure to facilitate research in rare neuromuscular disease. This webinar will look at the tools and resources developed by TREAT-NMD and make suggestions on how these can be implemented in other disease areas.

The goals of this webinar will be to:

Inform stakeholders about the network, its background, establishment and ethos and describe the various tools and resources the network has developed over the last 10 years

  • What are the foundations of good patient registries?
  • What is the federated registry model and how does it work?
  • The TACT model and it’s expansion to other disease areas
  • Engaging with industry to create education programmes
  • Creating family friendly guides of the standards of care

Potential audience

  • Patients / Patient Advocates with NMD
  • Rare disease Patients / Patient Advocates
  • Clinicians with an interest in NMD / Rare Diseases
  • ERNs
  • Specialist networks from other disease areas

For more information and registering, please click on this link

Speakers:

Becca Leary has worked in the NMD field for three years. She manages the European Reference Network EURO-NMD as well as overseeing  the work of the TREAT-NMD secretariat. Becca has expert knowledge in rare disease registries and is an experienced manager of international, collaborative projects.

Cathy Turner is Duchenne Programme and TACT Coordinator at the John Walton Muscular Dystrophy Research Centre. Cathy has also been responsible for supporting the NeurOmics project with significant involvement in communications, data-sharing and ethics. Prior to this, she was the communications officer for BIO-NMD. In addition, Cathy works closely with patient organisations on improving patient and family involvement in neuromuscular research and is part of a small team currently developing interactive digital tools to support children taking part in paediatric clinical trials.

Creating the infrastructure for translational research