Patient survey on THC:CBD in people with ALS

The THC:CBD patient survey is a systematic survey of 130 patients with amyotrophic lateral sclerosis (ALS), in which important findings on experience and satisfaction with treatment with cannabis-containing medicines containing tetrahydrocannabinol (THC) and cannabidiol (CBD) are obtained.

Cannabis-containing treatment for ALS

Medicines containing cannabis are used for severe illnesses when conventional medicines are not sufficiently effective. In the treatment of patients with ALS, various care options are available that include the use of cannabis-containing medicines for the purpose of symptom reduction. In ALS, cannabis-containing medicines can be used to treat spasticity, muscle spasms, pain, sleep disorders and loss of appetite, as well as to stabilize mood.

Clinical research into THC:CBD medication for ALS is still in its infancy. It is therefore important to investigate patient experiences with THC:CBD and to exploit the possibilities of THC:CBD in ALS therapy.

The patient survey on THC:CBD

To clarify open research questions, patients treated with THC:CBD are invited to take part in a survey. The survey enables the analysis of treatment experiences and therapy satisfaction with a cannabis-containing medication. The study includes the following contents:

• Recording the indication and care pathways of THC:CBD treatment in ALS
• Recording the treatment experience and treatment satisfaction with THC:CBD
• Assessment of ALS disease progression using the ALS Functional Rating Scale (ALSFRS-R)

Participation in the THC:CBD patient survey

The following criteria must be met in order to participate in the survey:

• Diagnosis of ALS
• Medical indication for treatment with THC:CBD
• Participation in the ALS pharmacy program with recording of medication via the digital management and research platform “Ambulanzpartner”
• Minimum age: 18 years

Procedure of the THC:CBD patient survey

ALS patients who have a medical indication for treatment with THC:CBD and participate in the ALS dispensary program are invited to participate in the THC:CBD patient survey.

The patient survey is carried out in the form of data collection on a questionnaire. The questionnaire can be completed in different ways:

• Sending by post, independent completion of the questionnaire and return with stamped envelope
• Telephone survey
• Interview during the visit to the ALS outpatient clinic

Duration and scope of the survey

It takes about 10 to 15 minutes to answer all the questions. Each patient is interviewed twice. One interview takes place at the time of the indication for treatment with THC:CBD and another interview after THC:CBD treatment has been initiated.

Organization and implementation of the THC:CBD patient survey

The THC:CBD patient survey is carried out by APST in cooperation with specialized ALS centers in Germany. The survey is part of the APST register study and has been approved by the ethics committee of Charité – Universitätsmedizin Berlin.

Use of the results of the patient survey

The results are anonymized and scientifically evaluated without drawing conclusions about individual persons.

The data is of great importance for gaining knowledge about the area of application and satisfaction with THC:CBD treatment. It is planned to publish the results at scientific congresses. Summaries of results analyses will be sent in the form of a “newsletter” to patients with ALS who are registered on the APST platform and have agreed to receive newsletters.

Yours sincerely

Your APST team

Contact
Dr. Dr. Susanne Spittel

Head of Medical Research

Phone: 030 – 810 314 0
Mail:

forschung@ambulanzpartner.de