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Patient and Public Involvement

genomesA key element of the 100,000 Genomes Project is to directly engage with both our participants and the public about its work.

A series of engagement events and opportunities are planned throughout the lifespan of the project, details of which can be found on these pages.

Our Events

Our 1000th participant recruited to the 100,000 genomes projectjames woods

Ten year old James Woods, a lifelong patient of Saint Mary's Hospital, has become the 1000th participant in Greater Manchester to be recruited to the 100,000 Genomes Project.

Read more about James and his family's story here.

genome cafeGenome Café  held at University Hospital of South Manchester, 18th November 2016

To raise awareness and promote the 100,000 Genomes Project in the run up to its launch at  University Hospital of South Manchester, we held a Genome Café in the main entrance of the hospital. The event was well attended, with over 200 people visiting over the course of the day, including patients, members of the public and healthcare professionals. Attendees were able to find out about the aims and purpose of the project, how they could get involved, and learn about genomic medicine more generally.

Behind the Scenes: Our Genomes and our Health, 27th July 2016

As part of the Behind the Scenes of Manchester Science event to celebrate Manchester's designation as European City of Science, we opened our laboratories to the public.

Genomic information is becoming a more important component of diagnosis and treatment in modern Medicine. Guests met few of our genetic scientists, researchers, counsellors and consultants. They were given an introduction to genetics and genomics in medicine, then after some fun science activities, guests went on a tour around our state of the art laboratories and were shown how the 100,000 genome project is integrating the latest technologies into clinical care and making a real difference in people's lives.

A summary of the event can be found here.

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Saint Mary's Hospital atrium, 6th July 2016genomes

Staff and patients were able to see the printed copy of the human genome and meet clinical scientists and researchers involved in the 100,000 genome project. The text, in type font size 4, requires 130 volumes to record the DNA code from the human genome that is present in every single cell of the body.

Pint of Science: Your Genome Your Health - May 2016

Clinical Scientists from the Manchester Centre for Genomic Medicine delivered an evening of genomics as part of the Pint of Science. The event had quickly sold out. The evening included a chromosome challenge with prizes and DNA extraction as well as talks from Dr George Burghel and Professor Bill Newman. To hear more about the evening please visit our Twitter account @CMFT_Genomics.

The evening also included the display of the full printed copy of the human genome (thanks to Genie, University of Leicester). This is likely to have been the first time for a printed copy of the human genome to be presented in a Pub!

Genomics 1 Genomics 2 Genomics 3 Genomics 4

Health Care Science Week 16-17 th March 2016

Our scientists celebrated healthcare science week 2016 with an interactive presentation for key stage 4 and 5 pupils from local schools which was well received. This gave us the opportunity to discuss our involvement with the 100,000 Genomes Project and how patients' samples are processed in the laboratory, from sample receipt and DNA extraction to sequencing and analysis of data using cutting edge technologies.

Our karyotyping competition and DIY DNA extraction activities generated lots of interest from students during a subsequent 'meet our scientists' session following the event, which were repeated on the following day in the hospital atrium, allowing us to share information about our work with patients and healthcare colleagues.

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Participants Day - March 2016

To celebrate Healthcare Science Week, and to mark one year since we recruited our first patient to the project - the team held a Open Day for participants on 17th March. Guests were welcomed into the centre and had a number of short talks about where we're going, what we hope to achieve, and then were invited to ask any questions they had. After lunch and a chance to chat to other people and families taking part on the trial, everyone was invited on a tour of the lab to see how it all works.

To date we've recruited over 500 people to the project, and we're thrilled that so many people have shown an active interest in helping us with our work contributing to the collection and decoding of 100,000 human genomes. The project is at an exciting stage, with more money promised to support the project nationally, and more people coming on board each week.

A summary of the event can be found here.

Here are some photos of the event:

Our first recruit a year on Family and Bill Newman, project lead Helix

Pint of Science - October 2015

Scientists and counsellors recently took part in an innovative engagement event, sharing their knowledge about science and genetics in a fun and quirky way.

The 'Pint of Science' event is a global initiative which takes place in pubs across the world, encouraging people to learn about developments in science research in a fun and accessible way - and all over a pint!

The team at Saint Mary's, including clinical scientists, genetic technologists and genetic counsellors, delivered some practical and engaging activities including a karyotyping competition and DIY DNA extraction.

Pint of Science 1

It was also an opportunity to share information about the 100,000 Genomes Project, a national project that involves collecting and decoding 100,000 human genomes. The project will enable scientists and doctors to understand more about specific conditions, transforming the diagnosis and treatment for patients with cancer and rare diseases.

Saint Mary's Hospital heads the Greater Manchester NHS Genomic Medicine Centre (MGMC), one of 11 centres in England committed to sequencing 100,000 genomes before 2017.

Event organisers said of the event:

"Thank you for bringing an amazing activity and an army of enthusiastic people! Everyone I spoke to really enjoyed the activities, especially those who won the prizes!"

The team have now been invited to present a full evening event, including further talks and activities around the theme of genomics.

University of the 3rd Age

A member of the team recently gave a talk at the University of the 3rd Age, pictured below. The talk, about the 100,000 Genomes Project, and wider Genomics teaching, was considered a great success by attendees.

Uni

The team were thrilled with the positive feedback:

"The most exciting things I learnt from you last night was the differences between those single gene disorders where the faulty gene does not produce a damaging protein and where it does, and the point why the virus will hopefully not deliver the "good" gene to a location where it will alter expression of another gene and cause more problems."

"It followed a logical progression and at each stage you captured the audience's attention with interesting statistics and quizzes."