A wonderful day of knitting – Knit-A-Thon-2023 raised 913 euros. A massive thank you to everyone who stopped by and donated on the day and beyond. Every cent counts! The money was split evenly between our four chosen charities: The Conor Foley Neuroblastoma Research Foundation (CFNRF), Neuroblastoma UK (NBUK), Oscars Kids and Childhood Cancer Ireland (CCI). These charities were established and are run by parents, some of whom lost their children to cancer. They continue their children’s legacy, doing an amazing job of advocating for children with cancer and better funding for research and aftercare.
And a special thank you to Ciara’s mam Aggie for the amazing handmade raffle prizes (chromosomes, antibodies, cup holders and many more) and a Master class on the day! We thank Jenny Duffy (RCSI Events and Communications Coordinator) for her time crocheting with us and for us! Thanks to Anggie’s and Jenny’s skills, there were lots of mascots to win – and many of them collected already. We much appreciate the support from the RCSI Estates and Porters who looked after us on the day.
Neuroblastoma is a childhood cancer. The word neuroblastoma consists of two words neuro and blastoma.The term neuro refers to nerves, blastoma – to a cancer of immature cells.
It starts in some types of nerve cells during embryo development.transforming immature nerve cells into cancerous cells. This type of cancer occurs most often in infants and young children mostly under the age of 5 years old.
Neuroblastomas behave very differently:
Cells can grow and spread quickly,
Cells can grow slowly
Cells can die for no reason, so a tumour goes away on its own.
Ok. Now, when the stress of the presentation is over, I am happy to share new technologies used during the SIOP2016. As I mentioned yesterday, my work was selected for e-poster presentation. It looked this way:
It is definitely a step forward. Anyone can look up any poster, listen to a commentary recorded by the author, zoom in and out and send a request/comment to the author. It looks cool and trendy. Though, you can feel invisible as no physical copy displayed in a designated area. No crowds of poster presenters and judges. No waiting faces desperate to share their study…
The actual Poster Discussion session was a traditional presentation when my poster was up on the big screen, I had 8 minutes to convince the audience navigating through figures. This session was late and no many attendees survived to come and challenge your statements. Nevertheless, it was enjoyable experience. 🙂
SIOP is the International Society of Paediatric Oncology. It is a global multidisciplinary society representing doctors, nurses, other health care professionals, scientists and patients or their relatives. The Society’s motto is ‘no child should die of cancer’. The meeting 2017 is being held in Dublin, the city where I live and work.
Indeed, it was appealing to attend the key meeting in childhood oncology field. As any participant, I had an opportunity to submit an abstract about my research. To no surprise at all, I received email notifying me on my work being selected for e-Poster presentation. Common stuff. The email also said that it would be displayed at designated stations, like big screens throughout the meeting. Very unusual format, but we are living in the digital technology era; things are changing all the time. So, I would not need to stay by the poster this time. Great – more time for networking and talks.
Then I received another email informing about a Poster Discussion session, which I assumed to be a standard procedure when a group of selected piers stand by your poster and ask Qs. None comes in majority cases. A participant stands and waits and waits till the session is over. So, of course I took it easy.
A day before the meeting, I downloaded the meeting app and started to browse along the content and features. Out of curiosity, I checked details of the Poster Discussion session. This was the moment of mental breakdown – I discovered being selected for an oral poster presentation! My chances were 1 in 1475 (the number of submitted abstracts). I should probably also buy a lottery ticket tonight. Could lucky things come together?
I will reflect on the new e-poster presentation experience later today…
Currently, the only popular trend in science is to publish only those results that look as a breakthrough or display statistically significant data. Obsession with positive outcome leads to discontinuation and non-publishing the all other data which don’t meet the requirements. As a result researchers and public did not know mistakes, efforts and drilling details of non-positive studies, so they have no opportunity to review this data, refine the research hypothesis and technical performance. This leads to waste of time and funding money.
The very recent study by Natalie Pica, MD, PhD, and Florence Bourgeois MD, MPH from the Department of Pediatrics at Harvard Medical School and Boston Children’s Hospital, both in Massachusetts has again confirmed the problem. The researchers carried out a retrospective, cross-sectional study of childhood randomized controlled trials and published their findings in Pediatrics(DOI: 10.1542/peds.2016-0223). They collected information from all trials that were registered ClinicalTrials.gov from 2008 to 2010, then searched scientific publications based on the trials. They also verified final status of the selected trials (completed or discontinued) by the end of 2012. If researchers found no publication, they contacted investigators and sponsors associated with trials to clarify the issue.
The main findings were:
19% of 559 trials were discontinued early representing approximately 8369 children. The most common reason for discontinuation – difficulty with patient accrual (37%).
30 % of the 455 completed trials were not published, representing 69 165 children participants.
Only 42 unpublished trials posted results on ClinicalTrials.gov.
Trials were less likely to be dropped if they were funded by industry.
Trials funded by industry were more than twice as likely to result in nonpublication and a longer mean time to publication when compared with trials sponsored by academia.
Researchers concluded that “withdrawal and nonpublication were common, resulting in thousands of children exposed to interventions that did not lead to informative or published findings. Trial funding source was an important determinant of these outcomes, with both academic and industry sponsors contributing to inefficiencies.” (Pica N & Bourgeois F, 2016, e 20160223)
Pica N & Bourgeois F, Discontinuation and Nonpublication of Randomized Clinical Trials Conducted in Children. PEDIATRICS V 138(3) 2016:e 20160223 Access to the study can be found here:
Neuroblastoma is a childhood cancer caused by the abnormal growth and development of non-mature nerve cells, called neuroblasts . The disease commonly affects children age 5 years or younger. Approximately 50% of children have tumours that have spread at diagnosis . The main challenge in treating neuroblastoma is to stop tumour spread and resistance to multiple drugs. Despite major advances in available therapies, children with drug resistant and/or recurrent neuroblastoma have a dismal outlook with 5 year survival rates of less than 20% [2-4]. Therefore, this cancer needs more research and funding as well as people awareness of these needs.
Davidoff, A. M. Neuroblastoma. Semin. Pediatr. Surg.21, 2–14 (2012).
Gatta, G. et al. Childhood cancer survival in Europe 1999-2007: Results of EUROCARE-5-a population-based study. Lancet Oncol.15, 35–47 (2014)
Peinemann, F., Tushabe, D. A., van Dalen, E. C. & Berthold, F. Rapid COJEC versus standard induction therapies for high-risk neuroblastoma. The Cochrane database of systematic reviews5, CD010774 (2015).
Peinemann, F., van Dalen, E. C., Tushabe, D. A. & Berthold, F. Retinoic acid post consolidation therapy for high-risk neuroblastoma patients treated with autologous hematopoietic stem cell transplantation. Cochrane database Syst. Rev.1, CD010685 (2015)
This blog is about neuroblastoma biology, its research challenges, and people and media perception of this disease. I am researcher and active supporter of science communication. I hope you will find interesting to read my blog and ask questions. Your questions would help me to cover topics which I have not heard of or may not plan to cover yet.