At Clexio Biosciences Ltd. (“Clexio”), we believe that listening to the Patient Voice is key. The patients’ day-to-day ordeal and unmet needs are the reason we are seeking to find effective solutions to their symptoms. In order to keep our research focused and perfect the development of our investigational therapies, we uphold the patient perspective as our frame of reference.
The involvement of both patients and their families in our research serves to shine a light on important aspects of living daily with these conditions and to highlight elements of the patient and family experience that only they perceive. This allows Clexio to focus on what the patient truly wants to receive from their treatment.
Clexio Biosciences is privileged to collaborate with a group of patients suffering from a sub type of Neuropathic Itch, Brachioradial pruritus (BRP). This group of over 500 patients shared with us their firsthand experiences with the disease, to help shed light on this condition.
BRP, caused by spinal compressions of cervical nerve roots, involves itch that may be very intense. When severe, it can be debilitating, affecting sleep and mood and can lead to a significantly reduced quality of life.
Our meetings with the BRP patient groups were held with a dual purpose. Firstly, to advance the development of effective therapies by incorporating patients’ insights into our clinical trial designs. Secondly, to develop a survey to achieve an even deeper understanding of the BRP patient community’s perspectives on their disease, its impact on their life, current treatment options that are available and their effectiveness in meeting patients’ needs. Our mutual goal was to help raise awareness and provide insights and guidance for the development of solutions for this condition.
Once the survey is completed, survey results will be published and shared with the scientific community.
To take part in the survey, please click here
Clexio is proud to have teamed up with Parkinson’s UK, Britain’s foremost Parkinson’s disease association, to help understand more about sleep-related problems in Parkinson’s sufferers. Founded in 1969, Parkinson’s UK provides support and training to those suffering from Parkinson’s disease or caring for a Parkinson’s patient, as well as raising funds and investing in research to find a cure.
Sleep problems are a well-known symptom of Parkinson’s disease, and may worsen as the disease advances. These problems can be divided into 3 areas:
These problems can be exacerbated by the patient’s medication wearing off overnight, leaving people feeling stiff and slow in the early morning. This is known as “early morning off”, which can be debilitating for many people with Parkinson’s and affect their ability to hold down a job or a daily routine.
Clexio strives to ensure its research aligns with the needs of the Parkinson’s community by listening to those with firsthand experience of the disease and its impact on their daily lives.
With the help of the team at Parkinson’s UK, Clexio designed a sleep survey to capture patients’ experiences with the disease and their expectations regarding an effective treatment. After review by two separate groups of dedicated Parkinson’s UK volunteers, the survey was shared with people suffering from Parkinson’s.
396 people with Parkinson’s took part in the sleep survey and shared feedback about their daily struggles and challenges.
To read the blog and see results of the survey, please click here
Last updated: March 2022