PNH Registry and Research Tissue Bank Manager

Do you have the extensive regulatory experience required to run a research tissue bank and to develop an international patient registry? Do you have a strong understanding of the requirements for the delivery of support for a rare disease centre? 

We require a flexible and independent individual to oversee both the PNH (Paroxysmal Nocturnal Haemoglobinuria) Research Tissue Bank (RTB) and the developing International PNH Interest Group (IPIG) Registry. The post-holder would be responsible for delivering all aspects of administration and local governance of the RTB across both the University, where the RTB is based and samples are processed and catalogued, and with the NHS based National PNH Service, where samples are identified and collected. The IPIG PNH Registry is an academic project, funded through an international PNH Charity (IPIG), for the benefit of PNH patients globally. This is a major study to map the incidence, prevalence and pathway of care for people with PNH, which will inform both ongoing research and the development of future therapies to improve their quality of life. 

This role will require ongoing interaction with a range of different stakeholders – including the NHS, university researchers, charities, pharmaceutical companies and the human tissue authority. The successful candidate will have a qualification in a biological science and experience in tissue handling, processing and tracking along with an understanding of the Human Tissue and Data protection acts, ethical approval processes and knowledge of GDPR. The post-holder will be responsible for co-ordination and local governance of tissue collection, under the PI, to ensure compliance with the requirements of the Human Tissue Act and with the Human Tissue Authority and relevant Ethics Committees.  The post-holder will be responsible for training for those involved with the bank, covering use of the Achiever platform, use of PRS (patient registration system) and consent-taking, and be responsible for disseminating policies, standard operating procedures (SOPs) and advising on best practice.

The post-holder will liaise extensively with stakeholders in academic, commercial, clinical and diagnostic departments.  Experience of reviewing patient records in PPM will be required to oversee the population of the RTB database.

To explore the post further or for any queries you may have, please contact: 

 Darren Newton, Head of Clonal Evolution

Email: d.j.newton@leeds.ac.uk 

As an international research-intensive university, we welcome students and staff from all walks of life and from across the world. We foster an inclusive environment where all can flourish and prosper, and we are proud of our strong commitment to student education. Within the Faculty of Medicine & Health we are dedicated to diversifying our community and we welcome the unique contributions that individuals can bring, and particularly encourage applications from, but not limited to Black, Asian, people who belong to a minority ethnic community, people who identify as LGBT+; and people with disabilities. Candidates will always be selected based on merit and ability.

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