Plasma Cell Disorders Registry launches

The South East London Plasma Cell Disorders Registry is a new King’s Health Partners-supported research database for patients with multiple myeloma and related conditions.

Bringing in data from patients under the care of King’s College Hospital and Guy’s and St Thomas’ NHS Foundation Trusts (NHS FTs) plus Lewisham and Greenwich NHS Trust - this database will be an invaluable source of real-world data on patients with a range of rare haematological conditions.

The Registry is being rolled out across south east London, starting at King’s College Hospital NHS FT and Lewisham and Greenwich NHS Trusts, with Guy’s and St Thomas’ NHS FT to follow. 

Patients will be asked to consent for their data to be collected and will then be followed-up for the duration of their care across the three south London Trusts. The Registry will collect information from existing patient records, combining data that is currently dispersed across the participating Trusts into a single powerful resource. It will record demographic and diagnostic details, details of all treatments received for plasma cell disorders, and information on the response achieved by that treatment. 

The Registry was officially launched at an event at King’s College Hospital on Monday 5 December, attended by patients, consultants, nurses and trials staff, and members of the African Caribbean Leukaemia trust (ACLT). A patient representative spoke about her experience of treatment for myeloma, saying:

I think this is a great initiative and knowing that medication offered to me in the future will have been robustly tested, by a varied cohort of my community, will give me further confidence in the entire treatment process. It is important to have a testing programme that is as diverse as the doctors, nurses and community in which it serves, and I am looking forward in seeing how this register will enhance the health outcomes and quality of life for patients like me. 

Data recorded will be made available (subject to approval by a Registry Oversight Committee) for service improvement audits across the three participating Trusts and will also be available for research projects for publication. These might include reviews of established and novel therapies, investigations of particular disease characteristics, or exploration of the relationship between particular patient demographics and treatment outcomes.

A research database of this kind is particularly significant in south east London thanks to our very diverse patient population.

Myeloma is a disease with incidence rates 2.7 to 3 times higher in Black patients than in white or Asian patients so it is important that we look for and explore any potential discrepancies in treatment or outcome across our patient population. One of the first studies that Registry data will be used for will be investigating this.

If you would like to be kept up to date with the Registry, please sign up to our newsletter by emailing SUBSCRIBE to: Kch-tr.selpcdregistry@nhs.net

King’s Health Partners Haematology takes the latest research from bench to bedside, supporting and training healthcare providers to give the very best care to people with blood diseases.