Project Twenty21 - Patients

Please watch our quick and easy 3 minute animation of how the project works. 

Project Twenty21 is a UK & Channel Islands registry aiming to monitor the health outcomes of 20,000+ patients using cannabis based medicinal products (CBMPs), creating the largest body of evidence in Europe for the safety and efficacy of CBMPs. Drug Science hope that the findings of Project Twenty21 will provide evidence for NHS funding where the benefits of treatment with medicinal cannabis is proven to outweigh the potential risks.

This real-world registry aims to target the following indications:

• Anxiety Disorder
• Chronic Pain
• Multiple Sclerosis (MS)
• Post-Traumatic Stress Disorder (PTSD)
• Substance Use Disorder
• Tourette’s Syndrome
• Adult Epilepsy

New clinics will come on board as the project progresses, meaning that there will be more options available to patients in the future. If the current available clinics do not suit your needs.

Please register below for our project updates:

To enrol, patients must provide their chosen clinic (not Drug Science) with both:

1. A confirmed diagnosis of one or more of the following indications:

• Anxiety Disorder
• Chronic Pain
• Multiple Sclerosis (MS)
• Post-Traumatic Stress Disorder (PTSD)
• Substance Use Disorder
• Tourette’s Syndrome
• Adult Epilepsy

2. A history of (at least) two licensed medications, both of which must have been prescribed and proven ineffective at managing the patients’ condition. This information must be documented in a medical summary or a referral letter from their GP practice.

Project Twenty21 has partnered with licensed producers to subsidise the cost of private medical cannabis to £150 per product per month (maximum amount is capped based on dosage guidance from the Medical Cannabis Clinicians Society).  Smaller quantities of product (at lower costs) are available if the maximum dosage is not required each month.  Medication, dosage and costs should be discussed at your consultation.

Some cannabis-based medicinal products that may be recommended by the clinician will not be subsidised through Project Twenty21.  Patients can accept these medications but must expect to pay for these products at full price.  Alternatively, patients can refuse these prescriptions if they are unable or unwilling to pay for these products.  The prescribing doctor will send the Twenty21 medicinal cannabis prescription to the pharmacist.  Patients will be contacted by the pharmacist to make payment for the medication, this process may vary for each product. Medication will be delivered to the patients’ address following payment.

Please note that dispensing and delivery costs (normally charged for private prescriptions) are NOT covered for any non-Twenty 21 products that you may be prescribed.

To receive medication at a subsidised rate, patients must consent to have their medical data collected by Drug Science. This information will be anonymised and kept confidential. The data will be used to examine the benefits and side effects of CBMPs. We hope that this analysis will inform future medical cannabis policy in the UK.

We have a range of products from these licensed producers:

• Lyphe Group
• Khiron Life Sciences
• Bod Australia ltd
• Cellen Therapeutics
• Jamaican Medical Cannabis Corporation (products arriving 2021)

The Project Twenty21 formulary now includes a range of indica & sativa flower products with varying CBD & THC ratios as well as an increased number of different oils plus some alternative options including a synthetic medication.

We are aware that the Twenty21 formulary might not suit all patients. This is why clinicians have the freedom to prescribe whatever product is best for the patient, from all the products they are able to access, if the patient’s needs are not fulfilled by a Twenty21 product.  Your health data can still be collected and submitted into our registry and you will still be part of the project.

Before:

Please note that medicinal cannabis consultations are not intended for the diagnosis of a condition. Some patients may require an additional appointment at a charge if further assessment is necessary.

Patients should inform the clinic that they wish to participate in Project Twenty21 before their consultation. When contacting a clinic make it very clear that you are a Twenty21 patient to access subsidised products. 

Any products prescribed which are not included in Project Twenty21 are not subsidised and will incur prescription, dispensing and delivery costs.

Before scheduling a consultation, most clinics offer a pre-assessment involving a review of patient healthcare records. Please check with individual clinics as to whether there is a charge for this.

During:

Consultations will either be conducted remotely via telemedicine (access to video calling required) or face to face.

Patients must ensure that the doctor is aware they wish to participate in Project Twenty21.

The doctor will complete an initial assessment and questionnaire covering:

• Diagnoses
• Previous and current medications for a condition
• Other therapies which have been undertaken
• How symptoms affect the patient’s quality of life e.g. impact on sleep, mobility etc…
• Any previous cannabis use, including cannabis-based products. The clinician should be informed of:
  1. What has been most effective at managing symptoms?
  2. How this is taken – by oil, edibles, balm, smoking or vaporizing?
  3. Any issues or side effects experienced from using cannabis previously

The doctor will decide whether to prescribe medicinal cannabis products based on the patients’ medical history and clinical need.

Attending a consultation does not guarantee a medical cannabis prescription will be provided.

After:

Clinics will determine the frequency and cost of follow up consultation, with data collection occurring every 3 months. Patients must attend follow-up consultations to continue receiving their medication.

Project Twenty21 health outcome data will be collected by a network of private clinics.  Private clinics retain control over their consultation fees therefore patients will need to fund the cost of their consultation. This cost will vary between clinics and initial consultation prices will be listed alongside the clinician’s biography on the Drug Science website. The clinic directory contains details of all participating clinics, including details of specialities and consultation fees to help patients decide on which clinic they would like to register with.

Alta Flora, a Twenty21 founding industry partner, has launched an app called Eva for patients who are prescribed medical cannabis. Eva enables the collection of real-time patient self-reported data on symptoms, interactions with other drugs, and effects on symptoms and Quality of Life.

The app is now available to download on iOS and Android, find it in the app store.

Watch demo here.

Eva is a support tool for the patient use only, although you can choose to share this data with your doctor at your appointments. This data cannot be accessed by Drug Science and is not at all linked to our own data collection for the project.

Patient questionnaires for the project data collection are sent out by email once the patient is registered with a clinic and has received a login for our data collection system. Please contact your clinic if you require any further support around filling out questionnaires.  

It is difficult to give patients full information about medical cannabis products and their associated costs prior to consultation due to marketing regulations for unlicensed controlled drugs. Every consultation is unique to the patient’s needs, and your doctor may decide that you need to be prescribed more than one product. 

The chart below gives you an indication of what costs to expect. Consultation costs are entirely at the discretion of the clinic and not set by Drug Science.

* At the discretion of the clinic

** Dependant on product

We understand that expensive private medical costs can be a barrier for patients seeking treatment and share your frustration. We appreciate that due to the costs involved some patients will not be able to take part in this project but we hope that the results of this study will lead to medicinal cannabis availability on the NHS.