Work Package 7

Title of Work Package: Dissemination

Objective: The goal of WP7 is to translate clinical research findings from TIRCON to clinical practice by structuring research and care in the field of PKAN/NBIA at an international level. This will be accomplished through a variety of dissemination tasks within the TIRCON project, such as sharing knowledge of best practices, engaging in dialogue with patient organizations and public health bodies, and training workshops.
Tasks

Networking and communication plan

• Create a clear and concise networking and communication plan which will optimize dissemination and be implemented through-out the course of the project by the dissemination manager (HoBa)
• Setup of a dedicated internet platform that provides information about the project and will also serve as connector
• Preparation of information packages on NBIA meant for various public audiences (patient organizations, clinicians, scientific community, public health bodies, industry)

NBIA Network in Europe and USA

• TIRCON clinical centers in Europe and the USA will join their efforts in order to create a NBIA network that connects NBIA clinicians with patients, patient organizations and each other.
• Develop a joint educational protocol for a training workshop on PKAN and other NBIA disorders. This workshop will be organized in all partner countries according to the same protocol. It will be open to interested professionals (physicians, nurses, and other health care providers)
• Identify and map other potential clinical centers to include in the network in order to extend the reach to underserved regions and the diversity of provider expertise.

Dissemination of research results

• Implement international neurological conferences, especially those reaching child neurologists, neurogeneticists, and movement disorder specialists
• Publication in both high impact scientific journals and in journals of clinical medicine and public health
• Dispersement of information on the TIRCON web-page

Teaching PKAN/NBIA

• Specific educational training of the early-career scientists and clinicians in TIRCON to promote highly qualified future scientific and clinical human resources
• Creation of an international research prize for early-career scientists to promote best scientific work related to PKAN