Assisting Research & Development (R&D)

Right from the earliest days of Sleep Apnoea Trust Association, it assisted research and development, with the aim of improving the whole sleep apnoea experience for patients.

The early machines were large and heavy, hence the logo of the elephant’s head representing the CPAP machine and the trunk representing the tube and mask.

Oxford patients, who made up the majority of the early membership assisted with many projects such as

• How much CPAP therapy did patients need to be normal during the day
• Trialling pulse oximeters to see if home sleep studies were viable
• Discussions on the development of intelligent CPAP machines- today’s Auto CPAP
• Trialling weight loss using hypnotherapy.

Later on

• Trialling Mandibular Advancement Devices as an alternative to CPAP
• Trialling a travel CPAP machine

In March 2008,  NICE TA139 legally mandated that people with moderate or severe Obstructive Sleep Apnoea(OSA) with symptoms such as excessive sleepiness during waking hours ( OSAS , where s=syndrome), were to get CPAP therapy funded by the NHS, a rapid development of Sleep Clinics throughout the UK took place.

In 2011, the Sleep Apnoea Trust Association carried out its own research by surveying primary care trusts on how compliant they were with the legal and practical requirements of TA139. In a paper published in April 2013, the conclusion was that:

The overall conclusions is that the implementation of the NICE guidance has had a positive impact upon patient access to the diagnosis and treatment of sleep apnoea.

At around the same time, the  Sleep Apnoea Trust Association also funded some research by Sheffield Hallam University into active lifestyle intervention to reduce the incidence of OSA. This coincided with research published in the USA that identified increasing levels of adult obesity as the main driver for the rapid increase in OSA diagnosis and demand for CPAP therapy.

This was the last time that the Sleep Apnoea Trust Association was able to co fund research as the NHS Clinical Trial Standard was established.

It then carried out some more of our own research, in particular, as to how many sleep clinics fast tracked lorry drivers suspected of having OSAS and getting them treated. These results coincided with other organisations research and eventually a cooperative interest organisation, the OSA Partnership Group came into existence, campaigning to get rapid treatment for those whose jobs represented a high risk to public safety, such as lorry drivers, train drivers , pilots, etc.:

https://www.osapartnershipgroup.co.uk/

In 2014, the UK Government published Good Clinical Practice for Clinical Trials, which quickly paved the way to an outstanding protocol, that makes the UK< trials amongst the finest in the world.. But, it did mean a major increase in costs, way beyond that charity’s ability to provide funding.

https://www.gov.uk/guidance/good-clinical-practice-for-clinical-trials#overview

It was decided, that as the charity had a captive market of well over 1000 members on email, all with sleep apnoea and nearly all on CPAP, this could be useful asset to assist R&D and started talking with many clinicians about their potential use of this resource, fully observing the strict rules of patient confidentiality.

It started to survey its members with short questionnaires from researchers, who were preparing applications for R&D clinical trials funding

Around the same time, the requirement for patient representation on research trials committees started to grow and several Committee members took on those roles.

The Committee started to get a number of approaches, and quickly established some ethical rules to make sure that the former charity’s complete and total independence was not compromised,

Today, the new COI charity, the Sleep Apnoea Trust, is an active in a number of pre-clinical trial surveys and also as patient representatives.

Perhaps the highest profile is that  two SATA members are lay members on the new NICE Guideline Committee, which the new Sleep Apnoea Guideline, NG202 in Aug 2021.

By assisting those who wish to carry out research into sleep apnoea, SATA is providing the UK with an unrivalled resource and completely  free of any commercial pressures, thereby meeting the strict ethical standards that is imperative in todays medical world.

Update reports are carried in Sleep Matters as and when they are available to be published, and presentation at the SATAday Conference of large clinical trials are usually carried in the Members Area.