Pancreatic Acinar Cell Cancer Registry
Research type
Research Study
Full title
Establishment of a patient registry to better understand the pathogenesis, treatment and natural history of pancreatic acinar cell cancer
IRAS ID
184442
Contact name
Stuart Robinson
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Pancreatic acinar cell cancer is extremely rare making up less than 1% of all cancers to affect the pancreas gland. The rarity of this disease means that it is impossible to conduct meaningful clinical trials into effective treatments and as such we do not know how best to manage patients with this disease. It is broadly accepted that when possible surgical resection is the gold standard and outcomes seem to compare favourably to those for conventional pancreatic cancer.
For those patients who are not suitable for surgical treatment then the standard of care is systemic chemotherapy although there is no consensus regarding the optimal regimen to use. In one recent study of 39 patients with pancreatic acing cell cancer 18 were treated with chemotherapy using a total of 22 different regimens.
In patients with conventional pancreatic cancer who are able to undergo surgery we know that they benefit from chemotherapy following surgery. Whilst it is tempting to think the same will hold true for patients with acinar cell cancer there is no evidence to support this and it is possible that this treatment may in fact cause potential harm.
It is widely acknowledged that there is a need to adopt novel strategies to understand how best to treat rare cancers - an agenda that is being supported by multiple organisations across Europe under the umbrella of Rare Cancers Europe. One of the key strategies promoted is the development of international patient registries and tissue banks to develop knowledge regarding about which treatments are likely to be succesful in patients with these conditions. It is our goal to develop such a resource for pancreatic acinar cell cancer.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
16/NE/0326
Date of REC Opinion
31 Oct 2016
REC opinion
Favourable Opinion