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Cancer Trials Ireland

Questions for your doctor

f you would like to know more about whether there is a cancer trial suitable for you,  the first thing you do is to talk to your doctor and/or the cancer trials research team in your hospital.

Here are some questions you may have.

Finding a study / trial

  • Are there any studies or trials I could enter with my type and stage of cancer?

Details about a trial

  • Can you tell me why this study/trial is being done?
  • What is being tested and why?
  • What are the possible advantages and risks of taking part?
  • Is there a chance I will not get the treatment being tested?
  • Will I be allocated a treatment by computer, or do you and I have any choice?
  • How long will the study last?
  • What will I have to do if I take part?
  • Will I have to have extra tests or scans?
  • Will I need to go to hospital?
  • Will I need to take time off work?
  • Will being involved affect my day-to-day life?
  • Who will oversee my cancer care while I am participating – will I have a different doctor?
  • How will I find out about the results if I take part?
  • Can I take part in more than one trial?
  • If I join this trial could I miss out on trials in the future?
  • How long do I have to decide?

How they are run

  • Can I tape the meeting or take notes?
  • Is the study / trial approved?
  • Can I bring a relative or friend to the informed consent meeting?
  • Who will be allowed to see my medical records?
  • What information about me will be on the computer?
  • Who will be told I am in a trial?
  • Can I claim expenses, such as travelling costs?

Safety

  • Who can I contact if I have a problem?
  • What are the likely side effects?
  • Can I leave the trial if I want to?
  • What will happen if I get side effects?
  • Who can I contact in an emergency?
  • Who makes sure the trial is safe and properly run?
  • Am I covered by insurance if things go wrong?
  • Is there anything I am not allowed to do while I am in the trial?
  • Are there any drugs or medicines I shouldn’t take while I am in the trial?

World Ovarian Cancer Coalition- Impact Awards 2022

Impact Award Recipients Announced

Toronto, Ontario, November 30, 2022 – With a formal ceremony set to take place on 1 December 2022 today the World Ovarian Cancer Coalition announced that the Irish Network for Gynaecological Oncology (INGO) is among the list of this year’s recipients of the second annual World Ovarian Cancer Coalition Impact Awards. 

Nine awards in 5 categories will be handed out at the Coalition’s 2nd Annual Global Partner Meeting, being held virtually November 30 and December 1st. Winner in the Inspiring Collaborations category, The Irish Network for Gynaecological Oncology, comprising of over 30 of the country’s foremost gynaecological campaigners, researchers and patient advocates, underscores the immense value of partnership as they work together in unison to raise awareness in Ireland. 

Dr. Sharon O’Toole, Trinity College Dublin and Coordinator of the World Ovarian Cancer Day campaign at INGO outlined her extreme pleasure in accepting this award, “I am so proud of the INGO network and their dedication to raising awareness. Our World Ovarian Cancer Day awareness campaign focussed on symptom awareness following the stark findings that 4 out of 5 women in Ireland were not confident in recognising the symptoms of ovarian cancer.These findings combined with Ireland having one of the worst mortalities in Europe from ovarian cancer, are key drivers for our network. In order to reach a wider audience in 2022, we had the pleasure of working with The Reputations Agency where all expectations were exceeded in terms of impact, with a media reach of over 8.3 million people for World Ovarian Cancer Day. Our network allowed us to reach all corners of the country, spreading awareness on a regional basis as well as nationally. We are delighted that the World Ovarian Cancer Coalition has recognised our network in the Inspiring Collaborations category.”

Anne Murphy, a member of the INGO Network explained, “As an Ovarian cancer survivor, an advocate and an Oncology nurse by profession, I am so proud to be part of this inspirational group. I have witnessed through my involvement with the group the passion and determination and willingness of all involved to raise awareness and improve the dreadful mortality rates of Ovarian Cancer in Ireland. This organisation has grown year on year. This year was our most impactful in reaching communities at every corner In Ireland. 

My hope as an Ovarian cancer survivor is that through this campaign more women will be aware of Ovarian Cancer and recognise the symptoms, get earlier diagnosis and hence improve our dreadful mortality rates. 

Sincere thank you to the World Ovarian Cancer Coalition for the award that recognises INGO and its work which clearly demonstrates what working together can achieve all in the best interest of better patient outcomes.” 

The complete list of winners, by category, are: 

Inspiring Collaborations Award – this Award is in recognition of an organization collaborating and networking with other organizations to enhance each other’s work and change the future of ovarian cancer. Recipients for this year are:

  • Eva Strömsholm, Gynecological Cancerpatients of Finland
  • Irish Network for Gynaecological Oncology, Ireland
  • Natalie Ritrovato, United Kingdom

Charter Champion Award –

  • Hope for Heather, United States 
  • National Ovarian Cancer Coalition, United States 
  • Ovarian Cancer Research Alliance, United States 

The Every Woman Study™️ Award –

  • Ovarian Cancer Malaysia

World Ovarian Cancer Day Award –

  • Dr. Deborah Harkness, United States

Outstanding Achievement Award –

  • Sandra Balboni, LOTO ODV, Italy

The awards ceremony will be streamed on December 1st at 3:25pm UTC during the World Ovarian Cancer Coalition Partner Meeting. More information on the meeting and awards ceremony. can be found here: https://worldovariancancercoalition.org/our-work/22-partner-meeting/

About the World Ovarian Cancer Coalition 

The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. More information can be found on www.worldovariancancercoalition.org 

About The Irish Network for Gynaecological Oncology (INGO) Members

ARC Cancer Support Centres, Dublin; Answers for Cancer Podcast team; Breakthrough Cancer Research; Cancer Care West; Cancer Trials Ireland; CERVIVA; Circle of Friends Cancer Support Centre; Coombe Women & Infants University Hospital, Dublin; Cork ARC Cancer Support; Cork Cancer Care Centre; East Galway and Midlands Cancer Support Centre; Emer Casey Foundation; Irish Cancer Society; Irish Society of Gynaecological Oncology; Karen Fenton Ovarian Cancer Fund; Lynch Syndrome Ireland; Marie Keating Foundation; Mater Hospital Dublin; National Cancer Control Programme; National Immunisation Office; National Women’s Council of Ireland; OvaCare; Pink Ladies Cancer Charity; Purple House Cancer Support; Queens, Belfast; Sláinte an Chláir; Sligo Cancer Support; SOCK; Swell Fermanagh Cancer Survivorship Group;  St. James’s Hospital Foundation (GynaeCancerCare); Trinity College Dublin; Trinity St. James’s Cancer Institute; University College Dublin School of Medicine; and 221+ CervicalCheck Patient Support Group.

http://www.isgo.ie/irish-network-for-gynaecological-oncology/

www.thisisGO.ie 

For more information contact:

Phaedra Charlton Director of Communications and Marketing

World Ovarian Cancer Coalition phaedra@worldovariancancercoalition.org

Catherine Walsh, Director, The Reputations Agency 087 268 9532

National Cancer Registry Ireland Annual statistical report 2022

One notable milestone we report this year is that, by the end of 2020, for the first time, the number of people living after an invasive cancer diagnosis had exceeded the 200,000 mark to reach 207,000. This is equivalent to 4.2% of the population, or about 1 in 24 persons in Ireland, a >50% increase in numbers of cancer survivors compared with one decade ago. This reflects both an increase in the number of people being diagnosed with cancer every year and ongoing improvements in cancer survival, as also reported here.

https://www.ncri.ie/sites/ncri/files/pubs/NCRI_AnnualStatisticalReport_2022.pdf?fbclid=IwAR202xw_0A0MbdJ08ygDH7I_t_t4Ziru6za4Pt0DpAPWGMEZjRNTjZsq5Wc

The English National Lynch syndrome transformation project: An NHS Genomic Medicine Service Programme

The main barriers to universal testing identified relate to funding streams and systematic approaches to testing. 

Conclusions: This ongoing transformational project is supported by high levels of engagement across stakeholders in England. Despite barriers, significant quality improvement has been implemented, facilitating systematic delivery of universal testing for LS nationally, with reduction in variation in care.

Where are we in Ireland in relation to achieving to Universal Testing??

https://www.researchgate.net/publication/364756374_PP031-_The_English_National_Lynch_syndrome_transformation_project_An_NHS_Genomic_Medicine_Service_Programme

GeNotes helps healthcare professionals make the right genomics decisions at each stage of a clinical pathway(NHS)

Put simply, GeNotes provides educational information at the point of need (In the Clinic), with opportunities for extended learning (Knowledge Hub).

In the Clinic

The ‘In the Clinic’ articles are focused on the point of patient care, and each concise article is centred around a clinical scenario. The articles are organised into clinical specialties, with oncology being the first of many (see ‘The GeNotes roadmap’, below).

In the Clinic articles are framed round two contexts:

  1. presentation, or testing, stage; and
  2. results stage.

Presentation articles are aligned to NHS England’s National Genomic Test Directory, and allow the clinician to:

  • locate themselves through a generic clinical scenario;
  • check whether their patient is eligible for genomic testing; and
  • access information on how to request testing.

Results articles educate the clinician about the different types of results that may be returned and how these should or could be actioned, whether:

  • clinically actionable;
  • variant(s) of uncertain significance; or
  • no clinically actionable variant identified.

Patient perspectives

The medical profession has become much more technologically advanced and aware of the importance of prevention and detection of disease before symptoms appear and before treatment becomes imperative. 

For patients, it is disconcerting to be offered choice in screening decisions or treatment options. … How does one choose without knowing what the doctor knows? The patient often feels a time pressure to decide …

Not everyone is able to clearly articulate their questions, fears, or values. It takes a skilled physician to determine if what is being said is what is meant. It also takes time, often more time than busy doctors have to devote to individual patients, but it is time well spent.

Everyone is different. Every disease takes a different path. Everyone has emotions and values and preferences. So—how to help?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5962996/

Advanced Prostate Cancer

Patient webinar for people with advanced prostate cancer, their caregivers, and their families.

Experts provide information and answer questions about advanced prostate cancer to help patients and caregivers compare, discuss, and select treatment options with their doctor.

NCCN Patient Webinar : https://youtu.be/OgqnEyEdzh0

Ovarian Cancer

Know What Your Doctors Know patient webinar for people with ovarian cancer, their caregivers, and their families.

Experts provide information and answer questions about ovarian cancer to help patients and caregivers compare, discuss, and select treatment options with their doctor. 

NCCN Patient Webinar(2021) : https://youtu.be/ggsyEEW98PA 

Cancer clinical trials – Ireland

Cancer trials test new and more effective ways to prevent, diagnose, and treat cancer.

Trials can involve testing new drugs or combinations of commonly used drugs, new therapies, new ways of treating cancer, or new ways of diagnosing cancer.

They may test new radiotherapy schedules, surgical techniques, medical devices, or physical therapies. They can also involve investigating blood samples and tissues.

City of Hope grows its genetic testing program

“Every mutation that is known to be associated with elevated cancer risk is actionable at some level,”

But that is not yet the standard of care. Yes, more and more cancer centers offer genetic testing.

https://www.cityofhope.org/city-hope-grows-its-genetic-testing-program

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