Project News and Updates.

Audiological monitoring in Swiss childhood cancer patients

PanCareLIFE researchers at UNIBE have just published a new paper ‘Audiological monitoring in Swiss childhood cancer patients’, funded in part by PanCareLIFE.

Pediatric Blood & Cancer, 65(3) e26877, DOI: 10.1080/08880018.2017.1323985



Full audiological monitoring is the best strategy to detect hearing loss early and to provide timely intervention in the absence of a clinical method of otoprotection. Full monitoring requires audiological evaluation before, and then during and after ototoxic cancer treatment. In a worldwide context of monitoring protocols that vary substantially, we analyzed the audiological monitoring of childhood cancer patients over the last decade across treatment centers in Switzerland.


We retrospectively searched for audiological evaluations in all nine Swiss Pediatric Oncology Centers. We analyzed proportions of patients who had audiological monitoring and described type and timing of monitoring. We determined predictors of audiological monitoring using multivariable logistic regression and described time trends.


We included 185 patients from the Swiss Childhood Cancer Registry diagnosed from 2005 to 2013 who had platinum chemotherapy and/or cranial radiation ≥30 Gray and who were alive at time of study. Less than half of children, 43%, had full audiological monitoring (before, during, and after treatment), while 72% were tested after cancer treatment. Nonstudy patients were less likely to have had monitoring in all phases of cancer treatment. Patients who received treatment with cisplatin or both platinum chemotherapy and cranial radiation were more likely to have had monitoring after treatment. Monitoring during and after treatment increased over the study period, but monitoring before treatment was insufficient in all time periods.


Our population-based study indicates that audiological monitoring is insufficient in Switzerland, particularly for nonstudy patients. Clinicians must become more aware of the importance of full audiological monitoring.

First CCI newsletter of 2018

Childhood Cancer International have published their first newsletter of 2018, and it’s packed with great stories from around the world!

PanCareLIFE is one of the stories featured – we’re delighted to work with CCI and to have a survivor representative join our meetings.


9th PanCareLIFE General Assembly Meeting

Members of the PanCareLIFE consortium met in Mainz, Germany for the 9th PanCareLIFE General Assembly Meeting, 08 – 09 November 2017.

Now that the data has been cleaned and harmonised at the Data Centre in Mainz, our focus has moved to the planned analyses for fertility, ototoxicity and quality of life that we’ll undertake in the coming year. We also heard about progress in the development of fertility guidelines.

As we enter the final year of the project, we are also focused on publication planning and organising our final conference, to be held in Paris on 26 Oct 2018. If you are interested in the final conference, please contact Kylie O’Brien (



Some of the team took the opportunity to visit the Museum of Ancient Seafaring in the evening
(Left: Aimilia Tsirou (Childhood Cancer International), Katerina Kepáková (UHB), Tomas Kepak (UHB), Dalit Modan-Moses (Chaim Sheba Medical Center), Andrica de Vries (EMC), Alison Leiper (Great Ormond Street Hospital); Right: Ancient Roman ship)

PanCare Videos

PanCare is a multidisciplinary pan‐European network of professionals, survivors and their families that aims to reduce the frequency, severity and impact of late side‐effects of the treatment of children and adolescents with cancer.

Survivors play a very important role in the network, so the PanCare team has prepared a video explaining the importance of listening to survivors.


The team has also produced a video explaining why curing cancer is not enough, highlighting the impact of late effects on survivors of childhood and adolescent cancer.

Autumn Newsletters from St. Jude’s

The latest newsletters from the Childhood Cancer Survivor Study and Long-Term Follow-Up Study are now available.

Learn more about the Advancing Survivors’ Knowledge (ASK) About Skin Cancer Study, meeting survivors’ health-related needs, the next wave of the Long-Term Follow-up Study and more!


20th PanCare Meeting

The 20th PanCare meeting was held 3 – 5 Oct 2017 in Luebeck, Germany, hosted by PanCareLIFE WP5 leader Thorsten Langer. The meeting covered a range of topics, including guidelines and practical consequences for endocrine long-term late effects, survivorship and long-term follow-up guidelines after stem cell transplantation. There were also updates from the PanCare EU projects, PanCareLIFE and PanCareSurFup. Dirk Deuster (UKM) gave an update on the PanCareLIFE ototoxicity study, and Elisabeth Korte and Magdalene Balcerek (CU) gave an update on the PanCareLIFE study on patient education in fertility preservation.

Children and Cancer: An Atlantic Forum

PanCareLIFE Research Manager Dr. Julianne Byrne (Boyne Research Institute) attended the Children & Cancer Forum last week in Washington, DC. The conference featured presentations and discussions by clinicians, researchers, parents and survivors, on topics ranging from immunotherapy to big data to survivors’ stories to underwriting.  The conference was sponsored by the AFLAC insurance company and was held in the Newseum on Pennsylvania Avenue, within sight of the US Capitol building.  Congressman Brian Higgins, chair of the House Cancer Caucus, spoke about how policy-makers like him need to be informed and educated about issues related to childhood cancer and survivorship.  The full video of the conference proceedings is available here.

Dr. Byrne, Boyne Research Institute and Margaret Low, President AtlanticLIVE, at Children & Cancer Forum

Sept 2017 PanCareLIFE Newsletter out now!

Check out all our latest news here!

25th Jubilee Tour of the Regenbogenfahrt/Rainbow Ride of the German Childhood Cancer Foundation

On August 25th 2017, the Rainbow Riders visited the German Childhood Cancer Registry (GCCR)* in Mainz on their tour from Trier / Aachen to Koblenz. Approximately 50 participants on the bicycle tour suffered from cancer in their childhood and adolescence. Now, with the Rainbow Ride, they provide a sign of hope and encouragement to children currently battling cancer and their parents. They visited the GCCR and the pediatric oncology center of Mainz University Hospital on their one-week 600-km jubilee tour to share their important journey.

The visit of the Rainbow Riders highlighted the importance of a nationwide collection of disease-specific data. Since 1980, the GCCR has collected data on all cancer cases in Germany in children under 15 years of age, with data from adolescents under 18 years of age being collected since the beginning of 2009. The registry currently receives about 2,100 reports of new disease each year. In addition, the GCCR carries out a systematic long-term follow-up. About 33,000 former childhood and adolescent cancer patients are regularly contacted by the GCCR to learn about their general health status and potential late-effects of their cancer in childhood and adolescence. The aim is to optimize future treatment methods and follow-up care.

It was very impressive to see how much strength and courage the Rainbow Riders provide to the children and adolescents who are currently affected by cancer. Both the Rainbow Riders and the hosts in Mainz will remember the visit fondly in years to come!

* The GCCR coordinates PanCareLIFE and participates in the PanCare network ( In both PanCareLIFE and PanCareSurFup (, the GCCR hosts the data centre (WP1), which is responsible for data collection and harmonisation for all datasets collected from the data providers in both EU-funded projects.

Pictures: Thomas Böhm (Universitätsmedizin Mainz)

Latest CCI newsletter

The latest Childhood Cancer International newsletter is out!