GDPR and Cancer Research

Ireland’s new Health Research Regulations (August 2018) are part of the Data Protection Act (May 2018), enacted in response to the GDPR (General Data Protection Regulations) of the European Union.

The new Regulations will safeguard data privacy for patients who, having been fully informed, give consent to have their blood, cancer tissue and associated coded data used for research. Informed consent has been best practice and is now being complemented by more stringent requirements to safeguard patient data. Biobanks and researchers have adopted the Regulations for new research projects.

However, the research community has serious concerns about (1) the vulnerability of ongoing research projects and (2) the research use of archival diagnostic pathology samples and data, under the new legislation. There is active discussion among relevant stakeholders and with the Department of Health, amid genuine fears that research will be impeded rather than encouraged.

Biobank Ireland Shortlisted For A Prestigious Eir Spider Award

Biobank Ireland are delighted to be shortlisted for a prestigious Eir Spider award. Established in 1996, the eir Spiders are the longest standing and most prestigious internet awards in Ireland (including Northern Ireland). They reward Irish and Northern Irish businesses and community organisations for their creativity and innovation and provide an important opportunity to recognise and showcase online excellence.

Biobank Ireland was set up in 2004 to promote a bio banking network in Ireland. Biobank aims to bridge cancer research & care, gain a better understanding of cancer and to devise improved treatment.

Sadly, four out of ten people will be diagnosed with cancer during their lifetimes. The development of more effective, targeted treatments and tests for cancer depend on an increased understanding of cancer and how it can be treated. Large research studies (using cancer tissue samples stored in biobanks) are needed to correlate biology with clinical outcome. This is the rationale for an Irish Biobank Network

Biobank Ireland are honoured to be nominated for such a distinguished award that showcases online platforms. Learn more about Biobank Ireland and the many ways you can support this worthy cause.

Biobank Ireland Team Complete Dublin City Marathon

After months of planning, training and pavement pounding our Biobank team ran Dublin City Marathon, raising an incredible €11,000 for Biobank Ireland.

While most of us were enjoying a lazy Bank Holiday Sunday, our team of 12 walked and ran a challenging 26 miles, raising much needed funds. All money raised will help promote a biobanking network in Ireland to bridge cancer research & care, gain a better understanding of cancer and to devise improved treatments. Well done and huge thanks to Alison Lee, Anne Burnham, Ciaran Flanagan, Geraldine Lynham, James Caffrey, John Quigley, Loraine Grant, Mark Sheehan, Martina Galligan, Michael O’ Brien, Teresa Ennis and Will Mullin who did us proud!

Well done to all involved and to those that sponsored our marathon champs! Want to start a fitness challenge while raising vital funds to support Biobank Ireland? Get in touch!

Will Mullin raised over €17k for Biobank Ireland, only €3k to go!

Will Mullin has raised over €17k for Biobank Ireland completing Marathon Des Sables, one of the world’s toughest challenges – the Marathon des Sables (a 257km run– five and a half marathons over six days), which the Discovery Channel has dubbed ‘the toughest footrace on earth’ commenced on April 10th, this year is also the longest in the race’s 31 year history.

Get a feel for the challenge from the man himself, in Will’s blog entry here:

“I got back from Morocco on Monday evening after arriving for the Marathon des Sables ten days earlier. After arriving in the desert on Friday night we were fed by the organisers and we were given local Moroccan food.

Then we went to bed to endure our first night on the ground exposed to the sandstorm that levelled half the camp later that night. 

Administration , bag and medical checks on Saturday with the same food on offer. Then our second night sleep before we woke up Sunday morning when self sufficiency starts (this means nobody can feed you or help you in any way and you must carry and prepare your own food for the entire race. So when your marathon starts you have to take All of your stuff with you on your back.

Day 1 – Sunday 10th April

The first day of the race started with 15km of sand dunes as soon as the race began at 8.30am. My bag weighed 10 kilos with water and 8 without and all of this was on my back. The humidity was really low on day 1 and i knew that I would need to manage my water really carefully as it would be rationed out for the remainder of the week. every participant got 12 litres per day but this was for drinking, eating, washing and during the race. There were people airlifted from the dunes in those first few hours and it hit home how quickly my race could end. After the dunes, we hit a sandstorm that lasted for over three hours. Finally got through that and there was another few km’s of dunes which was an awful sight. Finished a bit shocked and tired but ready for another day . 

With day one over and 5000 calories burnt I had to refuel but the food rations were tough to stomach. If i was going to survive in the race for the week, I knew I would need to consume at least 3000 calories every day. I was going to have to get on with eating dehydrated meals all week. Others weren’t so lucky and could not stomach their food. Common problems emerged quickly such as stomach cramps, diarrhoea and vomiting and it ended a lot of peoples races. 

In total 137 people dropped out of the Marathon des Sables during the week out of 1109 starters. the drop out rate this year was 15% compared with 5 – 10% most years. What made this year so tough? One element was the hight heat – It hit 48 degrees on the long stage day 4 during the 85 kilometer stage. This was compounded with a 5% humidity compared to 15% most years. It meant there was a dead heat and many competitors struggled to manage their water and hydration. they ran out of water and were taken off the course by helicopter. 

A 13 time MDS veteran from the UK, Mr Rory Coleman competed this year. He called the course this year ‘totally brutal…really brutal…really, really, fucking brutal and the toughest of his 13 years competing. As part of my diet during the race, I had to balance food intake, with liquid carbohydrates during the marathon stages, salt tablets to stabilise salts I was losing and electrolytes to rehydrate quicker that water might offer. 

The stages of the race were broken down as follows:

Day 1 – Sunday 10th April – 34.7km

Day 2 – Monday 11th April – 41.7km

Day 3 – Tuesday 12th April – 37.7km

Day 4 – Wednesday 13th April – 84.7km – took 16 hours to complete, last competitor came over the line in 34.5 hours.

Day 5 – Friday 15th April – 42.2km

Day 6 – Saturday 16th April – 17.7km – Unicef Solidarity Charity Stage

A typical day at the MDS involved waking up at 6 – 6.30 am and collecting your first rationed 1.5 litre water bottle. with this you would wash your teeth, use some water to rehydrate your breakfast – mostly dehydrated granola with raspberries – disgusting! Once that was done, it was time to rinse the water bottles with milton sterilising tablets, praying that the taste wouldn’t stay in the bottles all day – it did. On with some electrolytes in water to hydrate, salt tablets next and then pack up the bag and get going. We all wore the same clothes for 7 days so there was no need to change or wash, washing would waste precious water that we simply couldn’t afford not to drink. The water was always warm too.

After every stage I arrived back at the camp and the medical tent was like a warzone. People collapsing, vomiting , crying , getting drips pumped into them , feet ruined , people limping around everywhere . The queue had hundreds of people each night so I took to treating my own blisters and taped feet myself. I pretty much taped every moving muscle to save it from chaffing and it helped me in the later stages of the race. Two fellow competitors, both Irish, started to pass blood in their urine during the race. The doctors told them their bodies were so empty of resources that they were now burning protein in their muscles and the blood was the waste unneeded for fuel. That is how tough and serious it became for them and one dropped out immediately because it simply is not worth your health. He worked for 2 years for this race, but ‘it is just a race’.

On a plus with this race, the organisation was superb, given it was in the middle of the desert. Every single competitor was GPS Tracked for the whole race (introduced after one man got lost in a sandstorm for 10 days in 1995 and survived on bat blood and urine until he was found) It meant supporters back home could track us each day, watch a live webcam at the finish line every day and send live messages that were delivered to us in the camp each night. 

I came home in 224th place and was second Irish person home. In truth, I am so happy to come home from this race with a medal that positions just do not matter. I could have easily fallen medically or with dehydration, or blistered feet but I navigated my way through the problems and was lucky to come out the other side, with a medal i have wanted to own for 20 years.”

You can sponsor Will on his Biobank fundraising page and help him raise his €20,000 fundraising target. It’s not too late to sponsor! Help him get over the final finish line!

Join Team Biobank this October and run the Dublin Marathon for Cancer Research.

Take on the Dublin Marathon in support of Biobank Ireland and join the race against cancer. We are looking for keen individuals, be it a beginner runner or an athlete to come together and train under the guidance of Will Mullin and form a team to take on the Dublin Marathon in aid of Biobank Ireland next October.

Will Mullin has ran over 40 marathons, among them 15 at the Dublin Marathon. He has just returned from the Sahara where he completed the Marathon des Sables, 6 marathons in 6 days dubbed the toughest footrace on Earth. With a Personal Best in the Marathon of 2.52 in Dublin, he is looking for ten to twenty runners to join him on team Biobank to raise much needed funds for cancer research in 2016.

If you’ve never run a marathon before, you are perfect! Will is looking for people who have dreamed of completing the distance and he will help you get there. He will create a bespoke training plan for you and will meet monthly to run with you, motivate you and amend your training plan as you progress and get closer to Marathon Monday.

What you need to do: We are asking you to raise a minimum of 1,500 with our help for Biobank cancer research. 

How to join: You can register your interest by contacting Elaine Kelly on elaine@ideadigital.ie or +353851070118.

Play your part in supporting cancer research in Ireland!

Sponsor Will Mullin today! Here’s why

Irish businessman Will Mullin takes on one of the world’s toughest challenges – the Marathon des Sables (a 257km run– five and a half marathons over six days), which the Discovery Channel has dubbed ‘the toughest footrace on earth’. Starting on April 10th, this year is also the longest in the race’s 31 year history.

The 35-year-old father of two will run in the gruelling and searing heat of the Sahara Desert. Midday temperatures in the Sahara can get up to 48 degrees Celsius and the night-time temperature can be as cold as four degrees. All he will be given is water, which is rationed and given out at checkpoints and tent space in which to sleep. The race rules mean Will must remain self-sufficient, and carry his own equipment – medical kit, spare clothes, sleeping bag, food and the all-important road book to prevent him getting lost.

Will said: “In order to prepare for the race – I have run eight marathons since Christmas, two over the hills of the Curragh in freezing temperatures below zero degrees in the middle of the night. This is to become accustomed to running when the body doesn’t want to, as well as adjusting to running that type of mileage back to back to replicate the week in the desert.
Will is completing this tough challenge for a cause close to his heart – raising €20,000 for Biobank Ireland which is a charity promoting a biobanking network of cancerous tissues in Ireland that aims to bridge cancer research and care. It also aims to bring a better understanding of cancer which will mean improved treatments.

There is a special reason for raising these much needed funds. His Mum and Dad are both cancer survivors – one of the reasons his Dad beat cancer was because of the drugs developed through biobanking. Now Will wants to give something back, and help other families with this life saving, invaluable and much needed research.

He added: “My dad survived because of the great work carried out by Biobank Ireland. My family is lucky and I want others to experience that feeling. Biobank need all the funding they can get to ensure that they can continue to fast-track cancer research to better diagnosis and treatment of patients.”

You can sponsor Will on his Biobank fundraising page and get the latest updates from Will on his his FaceBook page.

Want to know more about the gruelling Marathon Des Sables? Have a look at the movie and video promo

‘Irish dad set to take on the world’s toughest race’ – Will Mullin featured in The Journal.ie

BioBank Ireland MDS Fundraiser – April 2nd

Save the date – on April 2nd Will Mullin will host a BioBank MDS fundraiser before he sets off on his most gruelling challenge yet. Will is competing in Marathon Des Sables, the toughest footrace on earth – a gruelling 257km six marathon, six-day challenge in 30 – 50-degree heat in the Sahara Desert with his clothes, food and sleeping gear on his back.

Join Will for a music and fun filled evening, with BYO wine and great Asian food. Tickets are limited to 80 seats so make sure to confirm your booking in advance – see the event page for more details.

Will is competing to raise awareness and much needed funds for BioBank Ireland. BioBank Ireland freezes and provides cancer tissue samples to the extensive research in the area. In turn this aids the development of new less toxic treatments that ultimately block further cancer growth. His family has benefitted enormously from the work BioBank do and Will wants to raise much needed funds and awareness.

If you are unable to come on the night but would still like to contribute to BioBank Ireland – please visit his fundraising page to make a donation.

Will Mullin to compete in Marathon De Sables for Biobank Ireland


What is the toughest obstacle you have ever overcome? For Will Mullin his toughest challenge has been inspired by a cause that is very close to his heart. This April, Will is taking on The Marathon des Sables- a race that the Discovery Channel has dubbed ‘ the toughest footrace on earth’.

The 35 year old father of 2 will run 251 km – the equivalent of five and a half marathons in six days, in the Sahara’s gripping heat. All he will be given is water and space in a tent to sleep in. The race rules mean Will must be self sufficient, and carry his own equipment and food. He will also need room for dedication, drive and sheer determination.

So why is Will taking on the toughest race on earth- in temperatures varying from a chilling 4 degrees to a burning 48 degrees?

Will is completing this tough challenge in order to raise €20,000 for Biobank Ireland. Biobank Ireland is a charity promoting a biobanking network in Ireland that aims to bridge cancer research & care. Biobank Ireland aims to bring a better understanding of cancer which will mean improved treatments.

Will has a special reason for raising these much needed funds. His Mum and Dad are cancer survivors – one of the reasons his Dad beat cancer was because of the drugs that were developed through biobanking. Now Will wants to give something back, and help other families with this life saving, invaluable and much needed research.

While you are not being asked to overcome the sandy Sahara, the unbearable thirst or run more than 50 kilometers a day, you can donate to this cause. In supporting Will and Biobank Ireland you will be fast-tracking cancer research for improved diagnosis and treatment. Doesn’t that sound like an amazing investment? You can sponsor Will here and follow this amazing journey on his Facebook page.

Biobank Ireland announcement at the BBMRI & Insight conference

Biobank Ireland announced on Jan 7th at the BBMRI / Insight conference in University College Cork that we would donate a grant to support a part-time biobank scientist for their biobank, which is part of the cancer biobank network. This will enable them to finally start biobanking and leverage further support.

DAIL QUESTION to Minister for Health, Leo Varadkar

* Minister Varadkar was asked by Finian McGrath TD if he will support Biobank Trust Ireland (sic) in 2015-2016 (details supplied); and if he will make a statement on the matter.

REPLY

I acknowledge the benefits that would accrue from a national biobanking infrastructure. In 2012 the Health Research Group adopted a National Plan for Biobanking. An action “to take steps to establish a national biobanking system and support infrastructure by 2016” was subsequently included in the Action Plan for Jobs.

The Health Research Board, which is funded by my Department, has led work on the biobanking initiative with the relevant agencies and is progressing the initiative. It would, therefore, be appropriate for Biobank Trust Ireland to engage with the HRB on the matter.

See link to RTE news coverage of the “Biobank Ireland – Now We Are 10” meeting in September 2014.

www.rte.ie/news/2014/0911/642907-biobank/

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