Lynch Syndrome Identification Project [LSIP]
Research type
Research Study
Full title
Can Lynch Syndrome diagnosis be increased through direct patient contact in primary care?
IRAS ID
316180
Contact name
Alys Dean
Contact email
Sponsor organisation
Northumbria Healthcare NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
This is a primary care project aiming to increase the yield of Lynch Syndrome (LS) diagnosis through direct patient contact.
LS is an inherited condition which significantly increases the risk of cancer in affected individuals, recent research has shown a prevalence of 1:279 with the vast majority of cases being undiagnosed. Owing to the aetiology in colorectal(CRC) and endometrial(EMC) cancers NICE have advised all are tested during histological analysis. A recent paper published in the Lancet has also advised all patients with Lynch take high dose Aspirin significantly reduced to incidence of CR (reduction of 50%).
To date the Modified Amsterdam Criteria has been used to identify high risk patients warranting referral from primary care to genetics. We have expanded this criteria after discussion with our genetic collaborators to include the most up to date NICE recommendations. Our criteria is a patient who meets the Modified Amsterdam Criteria OR who has a personal history, or family history in a first degree relative of a CRC or EMC diagnosed <70yr and since 1990 (when histological samples should still be available).
Patients will be directly contacted with information and an invitation to complete a family history form if they wish to discuss this further.
We aim to increase the diagnosis of Lynch in those who currently do not know they have the condition and in so doing we will improve cancer survival through chemoprevention, surveillance programmes and earlier presentation and investigation of symptoms.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
23/YH/0012
Date of REC Opinion
23 Jan 2023
REC opinion
Unfavourable Opinion