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UK-PSC Project Manager

Awarded to University of Cambridge (Department of Medical Genetics)

Dr Richard Sandford, University Reader in Renal Genetics, Department of Medical Genetics, University of Cambridge

Dr Gideon Hirschfield, Senior Lecturer/Hon. Consultant Physician, Centre for Liver Research, Institute of Biomedical Research, University of Birmingham, Birmingham

Dr George Mells, NIHR Clinical Fellow, Department of Medical Genetics,Cambridge Biomedical Campus, University of Cambridge

The total grant awarded is £15,125 (inclusive)

Duration of award: 1st October 2014 to 31st March 2015


UK-PSC is a national effort to improve understanding of Primary Sclerosing Cholangitis (PSC) and to find an effective treatment for this disease. For several years, one of the major aims of UK-PSC has been to establish a cohort of PSC patients who provide a blood or saliva sample for DNA extraction and provide information about their disease. The project has been highly successful, to date. Almost all NHS Hospital Trusts are participating in the project and almost 2000 patients with PSC have been recruited.

"Large projects like UK-PSC require very careful coordination," commented Dr Mells, "So it is excellent news that PSC Support has agreed to fund the salary of Ms Kelly Spiess, who has been the UK-PSC project manager for several years. Ms Spiess is based in the Cambridge research office and keeps the UK-PSC project running smoothly from day to day. She helps to set up the project in collaborating centres; makes sure that official project-related documentation is kept fully up-to-date, and handles daily queries from research nurses working on the project in centres throughout the UK.

In addition, Ms Spiess puts together the recruitment packs that are sent to PSC patients who enrol in UK-PSC. Recruitment packs contain the project information sheet, consent form, study questionnaire and kit required to provide a blood or saliva sample. Participants complete the consent form and questionnaire at home and use the kit to collect a saliva sample or blood sample at home or at the clinic. Participants send the completed documents and saliva or blood samples back to Cambridge. Ms. Spiess logs the documents and samples; enters information from the questionnaires into the project database, and sends the blood or saliva samples to the local laboratory for processing. The process of generating, sending and receiving recruitment packs is extremely important and Ms Spiess works hard to make sure the process is efficient and accurate. By funding Ms Spiess’ salary, PSC Support has given UK-PSC the best possible chance or success in the next phase of the project."

PSC patients want effective treatment and quality care, and one way to achieve that is by helping to push research forwards. We are delighted to announce that PSC Support has provided a grant to the University of Cambridge to support the ongoing sample collection efforts for UK-PSC over the next six months, as an interim to the goal of UK-PSC obtaining long-term independent financial support. The work is essential and underpins any additional and broadening of sample collection by the UK-PSC consortium. We believe the outcomes of the UK-PSC consortium plans will benefit all PSC patients and will provide a golden opportunity to help improve our clinical care and treatment. PSC Support signposts all new members to sign up to the programme to share their DNA data and recognises that the genetic information provides a vital data set needed to solve the PSC puzzle.  We’ve provided funding to the University of Cambridge this year to ensure the PSC genetics programme continues to grow and actively progresses.

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