Thursday, 18 April 2019

Conference on Public and Patient Involvement in Research - Hearing the Voice of the Patient

NUI Galway is holding the fourth national conference on Public and Patient Involvement (PPI) in research. The theme of this year’s conference is Progressing Together, reflecting the continuous learning and growth of the PPI community. The conference takes place in the Institute for Lifecourse and Society (ILAS), North Campus, NUI Galway from 10am-4pm on Wednesday, 1 May. There’s a sea-change in health research in Ireland: more and more patients are working with research teams to help decide what exactly should be investigated, how research should be designed and conducted, and how research results should be communicated. PPI involves an active partnership between members of the public, patients, researchers and doctors to ensure that the voice of the public or patient influences all stages of the research process. Patients are experts in their illnesses and carers have important knowledge gained from all that they experience. Researchers often do not have personal, lived experience of what they are researching, and hearing from patients about the reality of living with a particular condition provides a powerful insight into what matters most to patients. Conference attendees will hear about PPI from various different perspectives, including people living with conditions such as Alzheimer’s disease and Type 1 Diabetes; the parent’s perspective; the patient’s voice in healthcare; and the use of health data for research. The conference is jointly hosted by the HRB Primary Care Clinical Trials Network Ireland and PPI Ignite @ NUI Galway. The HRB Primary Care Clinical Trials Network Ireland is a collaborative group of researchers conducting clinical trials through general practice and primary care. Professor Andrew Murphy, NUI Galway and Director, HRB Primary Care Clinical Trials Network Ireland, said: “The public and patient voice needs to be listened to and heard, in order to ensure that our research is effective and meaningful for patients.” Professor Seán Dinneen, Consultant Endocrinologist at NUI Galway and UHG, and leader of this programme says: “PPI Ignite @ NUI Galway is providing training and support to help researchers and patients understand what PPI is and why it matters, and how to build partnerships that allow the public and patients to influence the research we conduct. Patients want to help and have an impact. PPI Ignite @ NUI Galway will help bring this about.” Presenters will attend from the UK, Denmark and the US, including Professor Carolyn Jenkins (Medical University of South Carolina) and Derek Stewart (OBE). Derek is a patient advocate from the UK who will be speaking about “Sustaining PPI – getting the balance right” and what he considers to be the key elements of a successful partnership working from a patient’s perspective and challenging the notion of the “usual suspects”. He will also provide expert feedback as part of a panel for short oral presentations on PPI.  Derek Stewart, said: “I am really looking forward to coming back to Galway. The PPI Ignite @ NUI Galway initiative in Ireland is one of the most exciting and innovative approaches to improving people’s health.” Dr Avril Kennan, CEO, Medical Research Charities Group will deliver a workshop titled “Should researchers be trusted with your health data?” - where attendees will share how they would like to see their health data managed. Avril Kennan said: “The law has changed recently so that scientists must fully inform patients how their health data will be used for research. There are positives and negatives to the new ways of working and we want to tease out what patients think about them. We have an exciting plan to bring the findings from the workshop to policy and decision makers, in the hope of making health research work better for everyone.” The conference is free and open to the public, researchers and all healthcare professionals with an interest in research and in hearing the voice of the patient. The conference will also be streamed live on the day from: Registration beforehand is essential and for more information, visit: or email, or contact Dr Nikita Burke, Development Manager with HRB Primary Care Clinical Trials Network, NUI Galway on 091 495308.  The conference is supported by the HRB Trials Methodology Research Network and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI). -Ends-

News Archive

Monday, 15 April 2019

Astronomers at NUI Galway are part of an international team which for the first time have used the VERITAS gamma-ray telescopes to measure the angular diameter of stars. The study was published today (15, April 2019) in the journal Nature Astronomy. VERITAS is an array of four 12-metre gamma-ray telescopes located at the F.L. Whipple Observatory in southern Arizona.  They are used to detect very-high-energy gamma radiation from exotic objects in space. They do this by measuring the brief flashes of visible light produced when gamma rays enter the Earth’s atmosphere. Dr Gary Gillanders of the School of Physics, Centre for Astronomy at NUI Galway, explains: “Stars are so far away from us that they appear as points of light in the sky. Their diameters are usually estimated indirectly using measurements of temperature and brightness.” The VERITAS team have directly measured the angular diameter of two stars by using an asteroid occultation method in which the shadow cast on the Earth when an asteroid passes between the star and the Earth is measured. This is a first for telescopes of the type used by VERITAS, and opens up a new window for direct measurement of the size of stars. Amy Joyce, then an MSc student at NUI Galway was part of the observing crew which measured one of the occultations.  Supported by the Irish Research Council, she is now based at the European Space Agency in Madrid. According to Amy Joyce: “The occultation is like a mini solar eclipse, although it is extremely faint and only lasts a few seconds, VERITAS is an ideal instrument to detect it.” Dr Mark Lang of the School of Physics, Centre for Astronomy at NUI Galway welcomed the results: “Normally we use VERITAS to observe objects like the supermassive black hole in M87, recently imaged by the Event Horizon Telescope. Now we have shown that VERITAS can make other types of measurements”. The study was led by Dr Michael Daniel of the Harvard-Smithsonian Center for Astrophysics and Dr Tarek Hassan of DESY, the German high-energy physics institute. The VERITAS collaboration includes colleagues at UCD and Cork IT. To read the full study on Monday, 15 April at 16:00 London time in Nature Astronomy, visit: -Ends-

Monday, 15 April 2019

MERLIN is one of four separate clinical trials by Orbsen Therapeutics studying ORBCEL stromal cell immunotherapies designed to treat some of the most challenging diseases  Orbsen Therapeutics, an NUI Galway spin-out biotechnology company focused on the development and commercialisation of stromal cell immunotherapies, announced its second generation immunotherapy ORBCEL-C is being administered to patients participating in MERLIN, a multi-site UK-based clinical trial to determine the therapy’s safety and effectiveness in treating two types of chronic autoimmune liver diseases.  Dr Larry Couture, CEO of Orbsen Therapeutics, said: “Orbsen’s product pipeline featuring ORBCEL immunotherapies has tremendous potential to make a significant impact on illnesses related to diabetes, autoimmunity and inflammation, as well as chronic liver diseases.”  MERLIN is investigating ORBCEL-C’s ability to safely and effectively treat individuals with primary sclerosing cholangitis (PSC), a condition characterised by inflammation in the bile ducts, and autoimmune hepatitis (AIH), a disease which causes the body’s immune system to attack the liver. If left untreated, both conditions may lead to cirrhosis or liver failure and subsequently require liver transplantation. Dr Stephen Elliman, Chief Scientific Officer at Orbsen Therapeutics and who discovered the ORBCEL therapy at NUI Galway, said: “Patients suffering with PSC and AIH have few therapeutic options today, and most patients require liver transplantation. We are optimistic taking ORBCEL-C immunotherapy to the clinic as a solution to preserve liver function and slow progression of these autoimmune liver diseases, ultimately reducing the need for liver transplants in these patients.” The clinical trial, which will follow as many as 56 patients through the treatment process, is under the direction of Chief Investigator Professor Phil Newsome from the University of Birmingham’s Institute of Immunology and Immunotherapy. Study sites include Birmingham, Oxford and Nottingham. “I am very excited about the potential benefits of this treatment for patients with PSC and AIH,” said Professor Newsome. “There is good evidence the selected cells within this new immunotherapy can reduce liver inflammation and improve liver function. The study aims to prove the treatment’s safety and efficacy, and explore the possibility it may be applied to future clinical trials to address other immune and inflammatory diseases.” Orbsen’s proprietary ORBCEL technology yields nearly 100 percent pure stromal cells, a significant increase in purity when compared to first generation stromal cell therapies. Orbsen is currently enrolling and treating patients in three additional clinical trials to assess ORBCEL’s safety and efficacy in the prevention and treatment of diabetic kidney disease, non-healing diabetic foot ulcers and moderate to severe acute respiratory distress syndrome (ARDS). Another trial is pending for patients with several auto-immune disorders. For more information about Orbsen Therapeutics: -Ends-

Monday, 15 April 2019

This summer, researchers, students and industry professionals can apply to take part in the KDU Visual Analytics Summer School, being held at the Insight Centre for Data Analytics, NUI Galway. In addition to contributions from invited world-leading researchers and practitioners, the summer school will draw on expertise present in NUI Galway’s Data Science Institute, Lero - the Irish Software Research Centre, J.E, Cairnes School of Business & Economics, and the Moore Institute for Research in the Humanities and Social Studies. Visual Analytics is increasingly used to help decision-makers who rely on “Big Data” to make their decisions. It supports analytical thinking and reasoning, by combining advances in areas such as Information Visualisation, Data Mining and Big Data. These combined provide users with interactive interfaces and meaningful processing abilities to draw out insights for their analyses. Invited speaker, Professor Alex Endert of the School of Interactive Computing at Georgia Tech said: “The research and development of tools and skills needed to understand data are becoming ever more important in today’s data-driven society. People, businesses, and governments who have technology to understand and use data will have greater opportunities. Visual Analytics occupies an important space in the space of data science and data literacy. In continuing to advance visual analytics as a discipline, we can continue to increase people’s data and analytic literacy.” Speaking at the announcement of the KDU Visual Analytics Summer School, organiser Heike Vornhagen of NUI Galway’s Data Science Institute said: “Helping people to develop skills in an emerging area that will have a lasting impact on both their research and career prospects is very exciting. It is a fantastic opportunity to spend time learning from how those in other sectors have developed their skills, approach problems, and implement solutions. Our hope is that it becomes a basis for a network of expertise through which future projects can be run”. Despite the growing importance of Big Data for multinational companies, government agencies and in a wide variety of public and private-sector organisations, there are few opportunities for people to upskill and to learn from others in different fields. Participants in the Summer School will be drawn from fields such as data analysis, visualisation, digital humanities, Human Computer Interaction (HCI), business and IT. Dr Noel Carroll of Lero said: “We see that visual analytics is an integral part of our industry research collaborations to combine visualisation, human factors, data analysis, and business value insights to better inform decision-making processes.” The workshop will consist of keynote talks to identify current trends and stimulate thinking, lectures to deepen participants’ understanding of the subject area, and hands-on tutorials to further participation and engagement. The KDU Visual Analytics Summer School will run from 10-14 June at the Insight Centre for Data Analytics, NUI Galway. Further details can be found at, or by contacting -Ends-

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