World's largest cleft lip research project is launched
The largest ever research database and genetic study into cleft lips in the world has been launched in the UK.
It is hoped the five year project – named The Cleft Collective – will enable experts to finally identify the cause of a cleft lip or a cleft palette, something that is currently unknown.
A gene bank is being established at the University of Bristol, which will jointly host the project in conjunction with the University of Manchester.
Parents of children with the condition are now being asked to come forward and join the programme, which will analyse their child’s DNA.
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An estimated 3,000 children will be involved in the research, which will follow them throughout their life to try and identify which treatment options are most suited to cleft lips or palettes.
Researchers are aiming to collect the DNA of all children born with the condition in the UK from autumn 2012 onwards.
Although the universities of Bristol and Manchester will lead the effort, the University of the West of England (UWE), University of Liverpool and NIHR Medicines for Children Research Network will also be involved.
“Children born with cleft often face unique challenges,” said Professor Jonathan Sandy, the lead researcher from the Bristol-based gene bank.
“These include speech and language issues, educational difficulties and broader health concerns.
"We do not know if these problems are caused by the genes that may be responsible for cleft or by other factors, such as lifestyle or 'environmental' factors.
“This study will help answer these important questions and could also solve the ultimate mystery of what causes cleft in the first place,” he added.
Another part of The Cleft Collective will be to investigate the support – practical and emotional – that the parents of cleft children require.
Sandy continued: “The birth of a cleft is a frightening time for mums.
“The mother is particularly sensitive to a change in the body language of the midwife and knows when something is wrong.
"We are constantly asked three questions. Firstly, what has caused this? Secondly, how will the child get on in life? Thirdly, what is the best treatment?
“This study is trying to answer those questions. This is a huge opportunity and we are fortunate to have found a generous funder,” he said.
This line of research will be taken care of by the Centre for Appearance Research (CAR) at the UWE.
Commenting on its involvement, Professor Nichola Rumsey, the co-director of CAR, said: “CAR is a leader in the study of the psychological impacts of cleft.
“Our focus will be to gather psychological data from parents on their experience of diagnosis and the early issues of parenting a child with a cleft and their support needs.
“This is a rare opportunity to follow a cohort of 3,000 babies and their parents during a two to three year period, and hopefully beyond.”
In total, The Cleft Collective is expected to cost £11 million.
So far £5 million worth of funding has been received from the Healing Foundation, with the remainder of the costs expected to be contributed by the universities involved and NHS partners.
The project has been welcomed by The Cleft Lip and Palate Association (CLAPA) and the organisation’s Acting CEO, Sue Carroll, said: “We at CLAPA welcome this new and exciting research programme which, over the next five years, will provide huge insights into cleft lip and/or palate.
“We urge as many people as possible nationwide to get involved.”
Parents are being asked to register their interest in The Cleft Collective at www.cleftcollective.org.uk.
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How healthcare can safeguard itself against cyberthreats
One of the most fundamental lessons from the COVID crisis is that health should always be a priority. In a similar fashion to the human body that frequently fights off viruses and foreign invaders that intend to cause it harm, the sector itself is now a prime target for another type of external threat: cyberattacks.
The figures speak for themselves: between December and January this year, hospitals in the UK were at 89% capacity, with 7,000 fewer available beds than there usually are. As the pandemic increased pressure on hospitals, clinics, and research facilities to create a treatment for patients globally, it has left the sector exposed to hackers who, like a virus, have been targeting it relentlessly and evolving their tactics.
From patient records being held ransom, to fake emails claiming to originate from the UN WHO, the NHS, or vaccine centres, through to attacks on the cold supply chain to find out the secret formula of the COVID vaccine, the healthcare industry is facing constant cyberattacks and struggling to cope. This threat is unlikely to go away anytime soon – and as such, the industry needs to take a proactive, preventative stance to stay safe in a dynamic digital world.
The responsive nature of healthcare – particularly of hospitals – means that efficiency is crucial to the industry’s standard operations. To support this, the sector has been embracing technological advancements that can improve the quality of work, enabling staff to meet pressing deadlines, and enhancing patient care. For example, the industry has been digitising records and improving its ways of working through digital means over the past few years.
This shift is critical to offer high quality patient care; yet, it also means the sector has become more dependent on IT, which can come with a risk if cybersecurity processes employed are deemed as inadequate.
Without the correct security measures in place, the desired efficiency gains realised, can be easily lost in a heartbeat. Simply put, an elementary glitch in the system can have a tremendous ripple effect on many areas, from accessing patient records and conducting scans, to maintaining physical security and protecting the intellectual property of experimental treatment development.
To prevent this, healthcare organisations need to ensure they’re considering cybersecurity as part of their overall digital transformation strategy – and setting the right foundations to create a culture where safety goes hand in hand with patient care.
Before implementing cybersecurity process, healthcare organisations need to assess the potential risks they face. Depending on how much confidential data the trust has, where it is stored, who has access to it and via which means, the cybersecurity strategy and associated solutions will change.
It’s fair to say that a medical device start-up where all employees have a corporate-sanctioned laptop and access data via a VPN will have radically different needs to a large hospital with hundreds of frontline workers connecting to the hospital’s Wi-Fi using their personal device.
These requirements will pale by comparison to a global pharmaceutical giant with offices in multiple locations, a large R&D department researching new treatments for complex diseases and a fully integrated supply chain. Considering the existing setup and what the organisations is looking to achieve with its digital transformation strategy will therefore have an immediate impact on the cybersecurity strategy.
Despite this, there are fundamentals that any organisation should implement:
Review and test your back-up policy to ensure it is thorough and sufficient – By checking that the organisation’s back-up is running smoothly, IT teams can limit any risks of disruption in the midst of an incident and of losing data permanently.
In our recent State of Email Security report, we found that six out of ten organisations have been victims of ransomware in 2020. As a result, afflicted organisations have lost an average of six days to downtime. One third of organisations even admitted that they failed to get their data back, despite paying the ransom. In the healthcare industry, this could mean losing valuable patient records or data related to new treatments – two areas the sector cannot afford to be cavalier about.
Conduct due diligence across the organisation’s supply chain – Healthcare organisations should review their ways of working with partners, providers and regulatory institutions they work with in order to prevent any weak link in their cybersecurity chain. Without this due diligence, organisations leave themselves exposed to the risks of third party-led incidents.
Roll out mandatory cybersecurity awareness training - Healthcare organisations shouldn’t neglect the training and awareness of their entire staff – including frontline workers who may not access the corporate network on a regular basis. According to our State of Email Security report, only one fifth of organisations carry out ongoing cyber awareness training.
This suggests it is not widely considered as a fundamental part of most organisations cyber-resilience strategy, despite the fact many employees rely on their organisation’s corporate network to work. By providing systematic training, healthcare organisations can help workers at all levels better understand the current cyberthreats they face, how they could impact their organisation, the role they play in defending the networks, and develop consistent, good cybersecurity hygiene habits to limit the risks of incidents.
Consider a degree of separation – Information and Operational Technology (IT and OT) networks should be separated.
Although mutually supported and reliance on each other, employees shouldn’t be accessing one via the other. This should be complemented by a considered tried and tested contingency and resiliency plan that allows crucial services to function unabated should there be a compromise. Similarly, admin terminals should not have internet access to afford a degree of hardening and protection for these critical accounts.
As the sector becomes a common target for fraudulent and malicious activity, putting cybersecurity at the core of the organisation’s operations is critical. It will help limit the risks of disruption due to cyberattacks, reduce time spent by the cybersecurity team to resolve easily avoidable errors, and ensure that institutions can deliver patient care, safe in the knowledge that their networks are safe.
Fighting future threats
With technology continuing to change the face of healthcare, the surface area and vectors available for attacks by malicious actors is constantly increasing. With the introduction of apps, networked monitoring devices, and a need for communication, the attack vector is ever expanding, a trend that needs to be monitored and secured against.
To prevent any damage to patients, staff, or the organisation they are responsible for, healthcare leaders must put security front and centre of their digital transformation strategy. Only then can the sector harness the full benefits of technology. Doing this should include implementing cybersecurity awareness training to challenge misconceptions around security, encourage conversation, and to ensure employee knowledge of the security basics and threats faced.
This ultimately allows healthcare organisations to do what they do best: provide the highest standard of patient care, safe in the knowledge that their operations, patients, and data are safe.