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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

Premier of genomics-inspired dance 'ConSequence', 25th June 2017

ConSequenceAs part of our Genomic Medicine Centre's educational and outreach events, we commissioned a dance piece to raise awareness of the 100,000 Genomes Project. 'ConSequence' was premiered at an evening of performances at Centre Pointe in Denton by local youth dance companies and delves into the actions and behaviours of genes and DNA, looking at shape, space and relationships. It is a new work created in collaboration between  The Pointe Youth Dance Company, led by Deborah Norris from Edge Hill University and  Dance Syndrome choreographed by Bettina Carpi and composed by Gary Lloyd. Dance Syndrome is a charity empowering learning disabled individuals through inclusive dance. Also performing at the event were  Ludus Youth Dance Company and Edge FWD (a dance company from Edge Hill University).

Greater Manchester Genomic Medicine Centre had an interactive stand at the event, providing information on the 100,000 Genomes Project and the opportunity for people to make a necklace containing a sample of their own DNA.

The event was well attended and ticket proceeds will go to the continued work of Dance Syndrome.

The programme is available here and here. There are plans to perform the piece later in the year and more details will be provided as soon as dates and venues are confirmed.

100,000 Genomes Project 2 year anniversary in Greater Manchester, 3rd April 2017

1000 genomesWe recently celebrated our two-year anniversary delivering the 100,000 Genomes Project by holding a half-day event for staff working on the project from across Greater Manchester and two of our Patient Ambassadors.

We are delighted to have now recruited almost 1800 patients to the project from our region, and we have received some of the first results for rare disease participants in the project which have led to a specific diagnosis.

A summary of the event can be found here.

Pilot Participants' Day, 28th November 2016

genomes 1We were delighted to welcome nearly 50 patients and their families who are taking part in the pilot phase of the 100,000 Genomes Project to our Pilot Participants' Day. During the event guests were told about progress in the pilot and main phases of the Project, introduced to the science behind whole genome sequencing and how results are genomes 2obtained. In discussion groups we heard about patients' experiences waiting 2 years for their results, how people might like to hear about their results, the meaning of words which might be used to describe results, and the transfer of the pilot to the main phase of the Project.  Families told us that the event had been helpful to them and they gave us some useful feedback on their on-going involvement in the Project. A summary of the event can be found  here.

We plan to organise a similar event in 2017 to give the participants of the main phase of the Project a similar opportunity for discussion and feedback.

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.

ourgenomes1 ourgenomes2

 

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.

genomics 1 genomics 2 genomics 3 genomics 4

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."