Chief Investigator and Principal Investigator
Leads the Adult SMA Clinical Network and has oversight of the study. Responsible for the overall conduct of Adult SMA REACH.
Responsible for site setup and providing support to sites. Must ensure study adheres to governance and provides overall trial management.
UK SMA Patient Registry Curator
Ensures patient registry data is up to date, accurate and complete. Facilitates PROMs data sharing between the patient registry & Adult SMA REACH.
Provides specialist advice with finalising the dataset for Functional Assessments and Outcome measures. Identifies training needs and provides training to sites when required. Provides support with the study design and educational programme.
Project oversight and management. Manages project team and identifies where support is required. Responsible for project budget and managing finances. Creates and maintains project planning documentation.
Provides administrative support to the Adult SMA REACH team. Assists with creation and maintenance of study documentation. Responsible for organising Adult SMA REACH network activities and is main point of contact for stakeholders.
Supports the sharing of PROMs data with SMA REACH clinic sites, as well as assisting with overall project. Works alongside patient registry curator to support patients and data.
Leads on data entry and manages the database. Provides data reports when sites request and is responsible for resolving any site queries.
If you have any specific queries, please use the email address below and name the team member to whom your enquiry is directed, we will do our best to get back to you as quickly as possible.
Adult SMA REACH is funded by: