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NHS To Launch Its First Evidence-Based Cannabis Patient Data Registry This Week

THE UK’s first National Health Service patients registry will start collating data from Thursday this week in a significant move for medical cannabis in the country.

The development has been welcomed and comes as the nation’s doctors are said to be shifting their cultural stance from viewing ‘cannabis as a dirty word’.

However, with the database not yet available to the nation’s private clinics there are concerns over the quality and volume of data it will garner. 

The NHS patients’ registry data collection has been welcomed.

An estimated 250 patients a month are said to be prescribed cannabis medicines through the NHS compared to over 2,500 in the UK’s private sector.

Very Useful Going Forward

BusinessCann first reported on the development of the ‘Patient Registry for Cannabis-Based Products’, last year and the NHS has confirmed it will launch on April 1. (For background on its launch see here).

Dr Daniel Couch, Medical Lead at the UK Centre For Medicinal Cannabis welcomed the move as a sensible way of establishing an evidence base that will inform prescribing and future Randomised Controlled Trials (RCT). 

“The Department of Health establishing a such a registry is undoubtedly in the interest of the patients – this has been an issue for some time. 

“At this stage we need a middle ground and establishing a registry to collect data is a sensible way forward and will be very useful.

“It is going to allow us to collect data that can be shared on how cannabis medicines are prescribed and the benefits patients get. This data can then be used to inform clinical decisions and guidance and, also, to undoubtedly inform further RCTs,” he said.

Whilst acknowledging concerns that it is restricted to NHS patients he did reflect on the impact it would have it if produced ‘some striking results’.

Step In Right Direction

“This is is step in the right direction. We are seeing a very gradual change as the evidence emerges on the efficacy of cannabis medicines such as Epidyolex, and data is key to changing medical attitudes towards anything.

“Cannabis is no longer a dirty word, and, as it becomes a pharmaceutical product, doctors will then look upon it as a medicine,” Dr Couch added.

Anthony Ordman is Honorary Medical Director of Integro Medical Clinics – one of the 20-plus private clinics to have emerged since the law change in 2018. 

He would like to see the registry opened up to the private sector and believes the restricted conditions available for treatment through the NHS will limit its effectiveness.

He said: ”A patient registry is certainly a step in the right direction and clearly the more data collected the more information will be available for analysis. 

“However, it is worth recognising that in the NHS, for the foreseeable future, there will be very low numbers of patients treated, and they will have very specific conditions such as intractable epilepsy, muscle spasm from Multiple Sclerosis, and so on. 

Private Clinic Happy To Help

“By contrast, in the private sector we tend to see patients with less well-defined pain, and a cluster of symptoms. In effect we will not be comparing like with like in the two sectors.

“Therefore, some careful thought therefore has to be given to how to structure the registry that can include as much of the data that is available but captured in a manner that will provide high enough data quality to satisfy the requirements of NHS specialists and government statisticians.  

“We at Integro would be very happy to contribute to this discussion.”

Elaborating on the reasons for the registry Muhammed Vohra, Principal Business Analyst at Arden & GEM, and NHS project lead on the registry, said: “By enabling the standardised collection of data for all patients being prescribed cannabis-based products, to treat certain medical conditions, our aim is to improve patient care through robust monitoring and evaluation.

Keeping Patients Safe

“For users, the registry supports clinical decisions to be taken, based on the latest guidance, so that we can keep patients safe while gaining better clinical evidence about the potential impact of these fairly recently rescheduled products.”

UK firm Sana Life Science, an emerging medicinal cannabis importer and  distributor, highlighted the need for more robust clinical trial data.

Arjun Rajyagor, COO, said: “The NHS are taking steps in the right direction by collecting clinical outcomes. However, it’s clear that the collection of such limited-scale observational data, whilst beneficial from a patient evaluation perspective, will have little or no real-world impact on increasing clinical engagement in the UK.

“Whilst including additional observational data from private clinics would help, it is only with formal clinical trial data that we will see significant prescribing in the UK.  

“When robust data is in place, cannabis-based pharmaceutical products will ultimately revolutionise care across a number of indications. We would love to see the UK Government start to be genuinely progressive by encouraging and supporting clinical trials.”

Boost For NHS Cannabis Prescribing 

The body responsible for determine cannabis prescribing in the UK refined its position last week after a campaign by the the family of Robbie Hughes, a young Norfolk boy who uses cannabis to treat his epilepsy.

Alison and Matt Hughes led the campaign for clearer guidance from National Institute for Health and Care Excellence (NICE), which sets prescribing guidelines for the health service.

They argued that the guidelines, as published in 2019, were under-written with a presumption against prescribing unlicensed cannabis.

However, with the threat of a High Court case looming, NICE issued the following clarification: “The fact that NICE made no such population-wide recommendation should not… be interpreted by healthcare professionals as meaning that they are prevented from considering the use of unlicensed cannabis-based medicinal products where that is clinically appropriate in an individual case.

“There is no recommendation against the use of cannabis-based medical products.”

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