Supporting the

Neuroendocrine Cancer Community

NPF and AMEND Visit ACC Research Team at Birmingham University

Jan 28, 2019

On Friday 18th January, NPF’s Chief Executive, Catherine Bouvier, and AMEND’S CEO, Jo Grey, met the ACC Research Team led by Wiebke Arlt at Birmingham University. 

There is a huge enthusiasm and drive to improve the pathway for Adrenocorticol Carcinoma (ACC) patients. Focus areas are earlier diagnosis  and the ability to follow up with less invasive procedures. Research on a specific urine marker is being trialled to support this. 

As with other NET types, there is work on liquid biopsies and looking for new biomarkers for prognostic identification, but also like other NETs, ACC’s are very heterogenous, and finding targets is a long process.

The team also highlighted the need for specialised services especially for some of the rarer NETs. They highlighted an NHS initiative called ‘Getting it Right First Time’, which we were not aware of, but now we know, a team we will be getting in touch with to try and push the agenda of commissioning specialised services for NET patients.

Getting It Right First Time is a national programme designed to improve the quality of care within the NHS by reducing unwarranted variations.

By tackling variations in the way services are delivered across the NHS, and by sharing best practice between trusts, GIRFT identifies changes that will help improve care and patient outcomes, as well as delivering efficiencies such as the reduction of unnecessary procedures and cost savings.

Importantly, GIRFT is led by frontline clinicians who are expert in the areas they are reviewing. This means the data that underpins the GIRFT methodology is being reviewed by people who understand those disciplines and manage those services on a daily basis. The GIRFT team visit every trust carrying out the specialties they are reviewing, investigating the data with their peers and discussing the individual challenges they face.