Abstract
Background
Salivary Gland Cancers (SGC) are rare. Over 23 distinct types account for only c.0.3% of cancer cases globally each year. They represent less than 5% of all head and neck cancers and encompass ‘salivary type’ histologies presenting in other areas of the body in the secretory glands, including the lacrimal gland, trachea and the vulva. There is an unmet need for a salivary cancer specific advocacy group to support patients and provide support for the development of new treatment options to improve outcomes for patients.
Methods
We established Salivary Gland Cancer UK (SGC-UK) which is a unique charity world-wide focused specifically on these cancers. A collaboration between a patient advocate and a salivary cancer medical oncologist it was launched in April 2019 to address the unmet need for patients, carers and those treating and researching these cancers. Using co-production to build an active patient and research community, SGC UK is working to advance understanding of SGC biology, advance research, develop new treatments, and support patients and carers.
Results
Patients with all SGC types are supported. Patients from across the UK can have clinical input through a specialist hub at The Christie NHS Foundation Trust, Manchester, UK A biobank of tumour and blood samples has been established supporting national and international research Regular national/international meetings build and support the community, provide networking opportunities and research updates Focus over the last 24 months was SGC pathology/genomics, lab studies, carbon ion treatment, and real-world outcomes Researcher – Patient co-production via discussion days informing organisational priorities and aims ensuring relevance and impact within the patient population Reliable patient information was co-produced including ‘Could gene profiling help you' information sheets and return to work guides including real-life stories and videos from our network empowering patients/advocates.
Conclusions
SGC-UK is a unique collaboration addressing a significant unmet need. A biobank/database is being established to drive forward national and international research. Reliable information and support is being provided to patients, carers and clinicians. Collaboration and co-production to benefit all.
Salivary Gland Cancers (SGC) are rare. Over 23 distinct types account for only c.0.3% of cancer cases globally each year. They represent less than 5% of all head and neck cancers and encompass ‘salivary type’ histologies presenting in other areas of the body in the secretory glands, including the lacrimal gland, trachea and the vulva. There is an unmet need for a salivary cancer specific advocacy group to support patients and provide support for the development of new treatment options to improve outcomes for patients.
Methods
We established Salivary Gland Cancer UK (SGC-UK) which is a unique charity world-wide focused specifically on these cancers. A collaboration between a patient advocate and a salivary cancer medical oncologist it was launched in April 2019 to address the unmet need for patients, carers and those treating and researching these cancers. Using co-production to build an active patient and research community, SGC UK is working to advance understanding of SGC biology, advance research, develop new treatments, and support patients and carers.
Results
Patients with all SGC types are supported. Patients from across the UK can have clinical input through a specialist hub at The Christie NHS Foundation Trust, Manchester, UK A biobank of tumour and blood samples has been established supporting national and international research Regular national/international meetings build and support the community, provide networking opportunities and research updates Focus over the last 24 months was SGC pathology/genomics, lab studies, carbon ion treatment, and real-world outcomes Researcher – Patient co-production via discussion days informing organisational priorities and aims ensuring relevance and impact within the patient population Reliable patient information was co-produced including ‘Could gene profiling help you' information sheets and return to work guides including real-life stories and videos from our network empowering patients/advocates.
Conclusions
SGC-UK is a unique collaboration addressing a significant unmet need. A biobank/database is being established to drive forward national and international research. Reliable information and support is being provided to patients, carers and clinicians. Collaboration and co-production to benefit all.
| Original language | English |
|---|---|
| Journal | ESMO Open |
| Volume | 8 |
| Issue number | 1 |
| Publication status | Published - Mar 2023 |
