TREAT-NMD is a global network of experts dedicated to advancing the neuromuscular field. The organisation is committed to accelerating the development of effective treatments and ensuring the highest standards of diagnosis and care for individuals worldwide. Collaborating with a diverse range of stakeholders, TREAT-NMD fosters innovation and provides critical resources to improve patient outcomes. Through its network, TREAT-NMD makes a significant impact on the lives of people affected by neuromuscular diseases.
The Role
The aim of the Global Registry Network Engagement Associate is to bring together network committee member registries into a sustainable, structured network and set of subgroups, that are capable of delivering an increasing number of projects, enquiries, and other activities.
The postholder will have an in-depth understanding of how registries interact with TREAT-NMD infrastructure (e.g. data quality tool, GRP, and CDW) and the capability of each registry. They will work with the Head of Real-World Evidence to develop and expand a core group of registries able to deliver complex projects.
The post holder will lead on all communications around network membership, project and enquiry participation, dataset rollout and data quality and will work with the registries team and network committees to address challenges, especially to improve the quality of data collected by registries and to support registries in adopting the sNMD dataset.
Main Duties and Responsibilities
The main duties and responsibilities of the Senior Global Registry Network Coordinator are:
- Develop and maintain a structured engagement plan for the registry network
- Deliver a range of engagement activities including webinars, online portals and virtual meetings
- Manage the membership process of the TREAT-NMD Global Registry Network including new memberships and renewals, and maintain a record of registries using Monday.com
- Lead registry-facing communications and act as first point of contact for registries during data projects and other work
- Work with team to identify priority registries and develop plans for support and training for these registries
- Ensure registries have up-to-date documents including CDAs, DSAs, and DTAs (as required) and maintain a record of completed documents using Monday.com
- Administer and attend fortnightly network steering committee calls to provide updates to the Chairs on relevant areas (e.g. network membership)
- Organise and attend meetings of network subgroups and undertake tasks on their behalf to increase engagement and functionality of network
- Contribute to efforts to update datasets, and log issues for discussion by subgroups
- Develop plans and the agenda for the annual curators meeting and support registry participation
Registry Project Involvement
- Coordination with individual registries to understand participation and facilitate data sharing
- Undertake an initial, visual quality check of submitted data if required
- Work with individual registries to communicate and resolve data queries
Registry Support
- Coordinate network and dataset bursary schemes and support staff writing applications for funding for industry-funded bursaries
- Develop an understanding of challenges faced by registries and develop support mechanisms to help registries overcome challenges
- Produce information and education materials to help registries play a more active role in the network and its work
Registry infrastructure
- Gain an in-depth understanding of TREAT-NMD infrastructure and provide demos to potential registry users
- Onboard registries to and provide training materials and user support to those registries
- Monitor issue resolution by Data Governance and Technology team and maintain oversight of IT-support conversations with registries
- Advise on suggested adaptations and modifications to the system, that will result in enhanced user satisfaction
Other Requirements
- Undertake national/international travel, sometimes at short notice, as required
- Undertake work outside of normal working hours on an occasional basis
Salary: £31,000 circa per annum depending on qualifications and experience
Please send your CV and an a letter of application to info@treat-nmd.com by Monday 18th May 2026
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