Staff Name
Job Title
Rebecca Leary
TREAT-NMD Programme Coordinator
Main Roles and responsibilities
Michael Hails
Web/communications development
Central point of contact for all TNMD activities Supporting the Executive committee including administration of monthly calls. Work with Chair to develop the Description of Work Organise TREAT-NMD related events and workshops Represent TREAT-NMD at conferences and events Maintain / develop TREAT-NMD Website / Newsletter and Twitter Support TREAT-NMD Global Database Oversight Committee (TGDOC) Deliver TGDOC communications plan (quarterly newsletter) Organise annual TGDOC and curators meeting Oversee TGDOC global Spinal Muscular Atrophy (SMA) SMA / Duchenne muscular dystrophy (DMD) registry enquiries Support with the development of care guidelines – supporting SMA Delphi process Coordinate Natural history work in DMD to link to post marketing efforts Work with colleagues to facilitate the development of a Neuromuscular ERN Prepare minutes and reports where appropriate Maintenance and development of all websites which are part of the John Walton muscular research centre – this also includes TREAT-NMD Website/conference site, intranet and mailing lists. Oversee long term strategy for continual development and improvement of centre’s communication platform/infrastructure (including TREAT-NMD) – functionality, code, custom data types, css, information architecture, communication tools developed in one area is reused/recycled in another as appropriate to the benefit of all projects I am involved with. Oversee implementation, develop functional design & ensure successful launch of CRM for TREAT-NMD industry interactions Create & develop promotional materials (both screen and paper based) for majority of projects associated with the centre Development of social media presence and promote projects
Post funding information Funded until July 2017 by Federation to Eradicate Duchenne (FED)
NeurOmics/SCOPENMD - however this is subject to
Cathy Turner
DMD and TREAT-NMD Advisory Committee for Therapeutics (TACT) Programme Coordinator
Stephen Lynn
TREAT-NMD Network Manager and RD-Action Manager
• • • • • • • •
Develop content/concept and information architecture along with project implementation of informational iPad app for DMD trial Oversee TREAT-NMD Newsletter delivery and back up of site Oversee/maintain server which hosts many of the centre’s website Ensure required domains are renewed/reserved for future purposes Central point of contact for TACT Central point of contact for DMD related issues (DMD Family Guide, DMD Imperatives and translations) Updating Executive committee on TACT. Working with Chair and secretariat of TACT on meeting organisation Organise TACT meetings (venues, reviewers, applicants, funders, observers) Represent TNMD (emphasis on TACT) at conferences and events Maintain / develop TACT and DMD areas of TNMD website Support TACT Core Group Deliver TACT Committee (extended and Core) communications Organise bi-annual TACT meetings (one in US and one in Europe) Support with the update of care guidelines – keeping up to date with CDC process and working with Parent Project Muscular Dystrophy on family guide and translations. Coordinate UK National Clinical Trial Capacity ongoing work with clinical sites, National Institute for Health Research Representatives, and Patient Organisations. Oversee all TREAT-NMD Secretariat roles and responsibilities Responsible for budget management across multiple projects/accounts Support the Executive Committee and action items. Organise TREAT-NMD related events and workshops Represent TREAT-NMD at conferences and events Review TREAT-NMD Website / Newsletter content Work with TGDOC committee on registry-related activities Provide first point of contact for all industry enquiries to TREAT-NMD
Duchenne Children’s Trust, Joining Jack, Duchenne Research Fund Funded until May 2017
Newcastle University – Permanent post
• • • • • • • • • • Anne Oyewole
Post-marketing Registry Coordinator
Rachel Hay PTC Post-marketing Registry Assistant
Manage enquiries to the global SMA / DMD registries, including defining scope of work, contracting and costing for enquiries. Provide input to the Natural history work in DMD and link to post marketing efforts Facilitate the development of a Neuromuscular ERN Responsible for implementation of a customer relationship management platform to monitor TREAT-NMD industry interactions Represent TREAT-NMD at conferences and events Manage RD-Action team and activities for Newcastle University Representing RD-Action at meetings, workshops and events Provide input to relevant rare disease policy discussions at EU level, e.g. registries, ERNs, etc. Manage Newcastle University’ involvement in RARE-Bestpractices Responsible for establishing the business venture for the PMS platform (STRIDE-NMD), working with relevant University teams
Providing oversight of all activities related to the development of a post marketing surveillance (PMS) platform, including the integration of additional data sources (e.g. patient registries) Working with PTC global medical affairs officer and other members of staff to deliver communication plan (e.g. site/patient newsletters) and support and facilitate meetings (e.g. steering committee) Working with CINRG on delivering a regulatory compliant PMS platform Updating stakeholders (e.g. Executive committee, TGDOC etc.) on PMS platform Planning and delivering educational / training tools (e.g. materials, workshops and meetings) relating to PMS (for PTC and TREAT-NMD) Representing TREAT-NMD (emphasis on PMS) at conferences and events Maintaining / developing PMS area of TREAT-NMD website Preparing minutes and reports where appropriate Provide admin support to the PTC Translarna project For the PTC project these will be defined in more detail but will include providing support for the
Funded until March 2018 PTC Therapeutics
Funded for 24 months from start
communication with sites in relation to the TREAT-NMD deliverables and for date PTC preparing for steering committee meetings and conference calls. Therapeutics. For TACT and TGDOC providing admin support for the planning and delivery of the meetings associated with these two committees. Maintain an accurate contact list for members of the TGDOC Supporting the maintenance of the TREAT-NMD website Take responsibility for the info@ email account Prepare minutes for the monthly TREAT-NMD Executive Committee teleconference meeting
