NATIONAL EHLERS-DANLOS SYNDROME SERVICE
The national EDS service is a specialist quaternary service for the diagnosis and follow-up of patients with rare, monogenic types of Ehlers-Danlos Syndrome (EDS).
The EDS service aims to:
• correctly diagnose and investigate rare, monogenic types of EDS
• follow-up specific rare types of EDS in joint cardiovascular clinics
• educate referrers about diagnosis, investigation, and management of patients with EDS, encouraging appropriate referral to the clinic.
• provide information about EDS for patients and their carers.
• develop guidelines and pathways of care for the different types of EDS.
• facilitate and initiate clinical and translational research to improve care for patients with rare types of EDS.
EDS Service in London
The EDS service is led by Dr Fleur van Dijk.
Molecular genetic testing is carried according to the Genomic Test Directory with most patients having molecular analysis in the Sheffield laboratory. The Electron Microscopy Service is based in Sheffield (Dr. Bart Wagner). The service for culturing fibroblasts is provided by the Enzyme Laboratory in Great Ormond Street Hospital (Dr Derek Burke)
Academic
The highly specialized EDS service has a growing clinical research portfolio with Dr Fleur van Dijk leading on the NEEDS study which aims to recruit individuals with a clinical and/or molecularly confirmed diagnosis of a rare type of EDS.
The successful appointee will be expected to contribute to research taking place in the EDS service. They will also see patients within the EDS service under supervision of the lead consultant in order to further their learning and training in EDS and related inherited connective tissue conditions.
KEY RESPONSIBILITIES
This post is a full-time research post, research aspects of rare types of Ehlers Danlos syndromes. It is suitable for registrar level clinicals in genetics, dermatology or other relevant specialities. The main base for the project will be the EDS service at London North West University Healthcare NHS Trust. This is a substantive postand is expected to contribute to a higher research degree. We are academically affiliated to Imperial College London.
London North West University Healthcare NHS Trust (LNWH) cares for the people of Brent, Ealing, Harrow and beyond.
Our team of more than 8,200 clinical and support staff serve a diverse population of almost one million people.
We run major acute services at:
• Northwick Park Hospital: home to one of the busiest emergency departments (A&E) in the country. The hospital provides a full range of services including the country’s top-rated hyper-acute stroke unit and one of only three hyper-acute rehabilitation units in the UK
• St Mark’s Hospital: an internationally renowned specialist centre for bowel disease
• Ealing Hospital: a busy district general hospital providing a range of clinical services, as well as 24/7 emergency department and urgent care centre, and specialist care at Meadow House Hospice
• Central Middlesex Hospital: our planned care site, hosting a range of surgical and outpatient services and collocated with an urgent care centre.
We are a university teaching NHS trust, in recognition of the important role we play in training clinicians of the future and bringing the benefits of research to the public.
JOB PLAN
LONDON NORTH WEST UNIVERSITY HEALTHCARE NHS TRUST
DRAFT JOB PLAN FOR CLINICAL RESEARCH FELLOW (subject to change)
Completed by Dr. Fleur van Dijk& Dr Neeti Ghali. Date 18/09/2024
MORNING
AFTERNOON
MONDAY
EDS clinic
EDS clinical work
TUESDAY
Research
Research
WEDNESDAY
Clinical team meeting to discuss cases, variants, research MDT etc
EDS admin
THURSDAY
Research/clinical admin
Research/translational work
FRIDAY
Research
Research
This is a provisional job plan and will be mutually agreed with the Leads of the services. On occasion and as patterns of service provision evolve and change, further rescheduling of clinical sessions may take place following negotiation with the Department of Clinical Genetics and EDS.
This advert closes on Friday 27 Dec 2024