About
TREAT-NMD is a global network committed to advancing diagnosis, care, and treatment for those living with neuromuscular diseases. We work collaboratively with experts, patients, and organizations to improve outcomes, accelerate research, and support groundbreaking initiatives worldwide.
Job Purpose
As an integral part of TREAT-NMD’s European IHI funded Patient Lifestyle and Disease Data Interactium (PaLaDIn) you will be directly involved in the delivery of TREAT-NMD’s deliverables with a focus across Work Packages 7 and 9. You will work collaboratively with other consortium partners within the project to ensure cohesive results. This post will work alongside the PaLaDIn Delivery Team and TREAT-NMD Research Team to ensure key deliverables are met on time and in full.
The post will require coordination with consortium partners, contribution to regular project status meetings, delivery of defined TREAT-NMD deliverables within the PaLaDIn project and working alongside key sub-contractors. This position will require strong organisation and communication skills along with a scientific background to effectively deliver successful project outcomes.
Key Responsibilities
PaLaDIn Project
• Lead Work Package calls with co-leads from other PaLaDIn partners, using scientific knowledge to ensure the project is delivered as imagined by TREAT-NMD.
• Work with senior staff across TREAT-NMD and the consortium to specify scientific requirements for Work Packages 7 and 9 and ensure these can be met.
• Work alongside the PaLaDIn Delivery Manager and PaLaDIn Project Manager(s) to ensure relevant Work Packages are planned and delivered to time, cost and quality targets.
• Lead and coordinate all activities relating to the PaLaDIn Ethics Board, serving as the primary point of contact for ethics governance, coordinating the development of the annual ethics report, facilitating ad hoc workshops, and ensuring compliance with ethics requirements throughout the project.
• Contribute to the refinement and evolution of core datasets based on feedback from registries, patients, clinicians, researchers, and other key stakeholders, supporting rollout and adoption across national and international registries.
• Lead the development of publications on dataset development and adaption, to contribute towards PaLaDIn dissemination activities, working with the clinical lead and other partners in the consortium.
• Liaise with Work Package 9 sub-contractors, developing a thorough understanding of the work being undertaken, the expected deliverables and outputs, and the dependencies linking this work to other Work Packages across the project.
• Lead work package 9 project meetings, ensuring effective and valuable discussions and decisions and proactive follow-up of actions to support effective project delivery and governance.
• Lead the scientific review and approval of subcontractor deliverables, providing expert input and constructive feedback to ensure outputs meet required quality standards, align with project objectives, and are fit for dissemination and implementation.
• Adapt and expand the FSHD-focused approach and outputs to support the further development of key deliverables to the broader neuromuscular and rare disease communities, including landscape reviews, stakeholder and market research, and engagement activities with patients and other key stakeholders to inform content and ensure relevance.
Scientific Communication
• Disseminate results through the creation of manuscripts and other technical documents, journal submissions and managing publishing processes with journals
• Attend meetings with external stakeholders (e.g. HTA bodies or regulators) as required to present/discuss work
• Play an active role in PaLaDIn discussions focusing on use cases – with emphasis on HTA models and development
Stakeholder engagement
• Act as a liaison person between the PaLaDIn and Registries Teams, to keep the whole team up to date on dataset development and create content for registries
• Develop strong relationships with patient organisations and registries, specifically those related to FSHD, to facilitate the exploitation of Interactium and PaLaDIn results
• Attend scientific conferences as required to present talks and posters, and to interact with all external stakeholders, including companies and researchers.
Key Accountabilities
• Deliver work in line with organisational policies and procedures.
• Meet agreed performance, quality, and service standards.
• Maintain accurate records and documentation.
• Build effective relationships with internal and external stakeholders.
• Contribute to continuous improvement initiatives.
• Ensure compliance with health, safety, and data protection requirements.
• Comply with company Code of Conduct.
• Comply with company Policies.
The postholder will be required to form working relationships with a diverse group of people internally and externally. Key contacts include:
TREAT-NMD (Internal)
• PaLaDIn Delivery Manager (Line Manager)
• PaLaDIn Project Manager(s) and other project team members
• Data and Registries Team
External
• FSHD Society
• 3rd Party WP9 Subcontractor
• Ethics Board members
• Other international project collaborators and consortium members
For further details please see the attached file:
