[ad_1] Job description We are looking to appoint a Research Assistant to work on an exciting new MRC funded Rare Disease Node project
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Job description
We are looking to appoint a Research Assistant to work on an exciting new MRC funded Rare Disease Node project on mTOR pathway diseases led by Professor Joseph Bateman. mTOR pathway disease patients suffer from a range of symptoms, from benign tumours in multiple organs, to brain malformations causing epilepsy, which can start in infancy. This project will unite the 14 rare mTOR pathway diseases in a single network to expedite research and treatment development and to connect patients with researchers and clinicians to develop diagnostic tools and drug trials.
You will work with Dr Mary Bythell and her NDRS (National Disease Registration Service) team to build and manage an mTOR pathway disease patient registry. You will be required to access the existing available clinically reported NHS mTOR pathway disease data, optimise informatic approaches to identify patients in England with all 14 mTOR pathway diseases and outcomes through dataset linkage and generate data analyses and summary reports.
The NDRS includes both the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). You will need to liaise with NDRS personnel and work with the wider NHS England systems and other National Diseases registries, to access relevant data.
In addition to building the registry, the role may also require involvement in developing an online, open-access drug-disease database matching mTOR pathway inhibitors to all 14 mTOR pathway diseases. Together with clinical and industrial partners, the drug-disease database and patient registry will be used to match patient populations with the most appropriate clinical centres, treatments, and clinical trials.
Contract type
Please complete as appropriate
This post will be offered on an a fixed-term contract for 2 years
This is a part-time post – 60% full time equivalent.
Key responsibilities
- Liaise with NDRS, NHS England and other data and information providers to gain access to sources of mTOR pathway disease data.
- Collect, curate and quality-assure, high-quality data and ensure the secure and appropriate transmission and storage of all data.
- Ensure data is received in agreed formats, in line with service level agreements.
- Attend and actively participate in various meeting groups as required.
- Validate and monitor completeness, ascertainment and accuracy of datasets.
- Present reports and findings to colleagues.
- Optimise informatic approaches to analysis of electronic health records.
- Ensure compliance with Information Governance requirements and standards.
- Identify, discuss and action own professional performance and training / development needs with your line manager through appraisal / individual development plan.
- To participate in all mandatory training as required, i.e. fire safety, information governance and all other mandatory training.
The above list of responsibilities may not be exhaustive, and the post holder will be required to undertake such tasks and responsibilities as may reasonably be expected within the scope and grading of the post.
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