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"Meet the Experts" Evening at UCL Cancer Institute

On the 24th January 2020, patients with chordoma and a friend or family member attended a special "Meet the Experts" evening hosted by Professor Adrienne Flanagan at the University College London Cancer Institute. Attendees had the opportunity to hear from clinicians and scientists with expert knowledge of chordoma, ask the experts questions, meet the researchers and visit the laboratories where chordoma research takes place.

The aim of the event was to share more information about the treatment of chordoma and the research that is being undertaken, as well as, a special opportunity to visit the laboratories and see the "science in action" by speaking to those doing the research. The event was also a chance to thank patients for their courage and hard work and for patients to meet and share experiences with other patients.

The Experts and their Presentations

46 members of the public attended the event and the evening started with welcome drinks and nibbles. Short presentations were given by leading experts in chordoma research:

Professor Adrienne Flanagan is the Head of Academic Pathology at UCL Cancer Institute and she spoke about her discovery that brachyury expression is the hallmark of chordoma, a biomarker which is now employed universally in the diagnosis of chordoma. Her work contributed in a major way to the recent anti-EGFR Afatinib Chordoma Clinical Trial that has opened in the UK.

Dr Beatrice Seddon is the Lead Sarcoma Consultant Clinical Oncologist at University College London Hospital and she spoke about the London Sarcoma Service specialising exclusively in the management (chemotherapy and radiotherapy) of soft tissue and bone sarcomas.

Mr Craig Gerrand is a Consultant Orthopaedic Surgeon and the Cancer Lead at the Royal National Orthopaedic Hospital and he spoke about the surgical aspects of sarcoma care, survivorship, and surgical outcomes.

Professor David Choi is a Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery and he gave a talk on complex spine surgery and spinal tumours such as chordomas.

Dr Sandra Strauss is a Medical Oncologist at University College London Hospital. Sandra shared her research on her study in Afatinib in locally advanced and metastatic chordoma.

Sylvie Leslie, a patient herself also gave a heartfelt talk about her experience and to promote the national chordoma day charity walk that is now due to take place in 2021

All the experts gave stimulating talks and many attendees were keen to ask compelling questions.

After the talks, the evening was open for members to have a chance to meet and chat with the speakers or other researchers or clinicians present that evening, and other patients over light refreshments that were served all evening.

The lab tours were open for members who were interested in visiting the laboratories and speak with clinicians and scientists who were currently doing research on chordoma.

The Lab Tours

Members were taken on a lab tour to three stations.

At the first station, members were given an introduction to genomics and drug screening, by Dr Solange De Noon and Dr William Cross, and were shown real data.

Members were ushered to the second station where Dr Inga Usher and Michael Coghlan explained the principles of culturing chordoma cells and tissues and shown how they are kept in the incubators.

At the third station, members were taken to the main laboratory and were shown by Dr Lucia Cottone and Lorena Ligammari how they perform the drug screening on the cells grown here. Members were given a chance to see the cells themselves under a microscope and shown a video clip of how chordoma cells react to a very potent drug.

At the end of the lab tours, members rejoined the lobby and continued their evening mingling with the experts and other patients.

Event Feedback

Overall, the members thoroughly enjoyed the evening and were highly engaged.

From the feedback forms the information we received was:

· There were 46 attendees on the night and 12 feedback forms received

· Everyone agreed or strongly agreed that all of the talks were inspiring and easy to understand

· Everyone strongly agreed that the lab tours were easy to understand, interactive and inspiring (those that participated)

· Everyone agreed or strongly agreed that the event improved their knowledge about chordoma research

· Everyone agreed or strongly agreed that the event has increased the motivation to support Chordoma UK

On average, people were likely to recommend this event to a friend

Staff members who volunteered that evening were:

- Ariadna Colomer – Clinical Trials Nurse

- Dr Lucia Cottone - Senior Molecular Biologist

- Michael Coghlan – Laboratory Staff at the Royal National Orthopaedic Hospital

- Dr William Cross – Bioinformatician at UCL Cancer Institute in Sarcoma Genomics

- Kate Davies – Research Staff at the Royal National Orthopaedic Hospital

- Dr Solange De Noon – Clinical Research Fellow specialising in pathology

- Lily George – Biobank Coordinator at the Royal National Orthopaedic Hospital

- Joanna Hindley – Research Staff at the Royal National Orthopaedic Hospital

- Lily Hoa – Project Manager for Professor Adrienne Flanagan

- Lorena Ligammari – Research Technician at UCL Cancer Institute

- Dr Inga Usher – Clinical Research Fellow

- Courtyard Café Catering staff

- Chordoma UK Trustees - Gerald Fitz-Gibbon, Richard Sutton-Mattocks and Ed Major


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