| answer text |
<p>To facilitate better and quicker diagnosis, patients with suspected Ehlers-Danlos
syndrome (EDS) are eligible to be tested on the newly-established Genomic Medicine
Service.</p><p> </p><p>NHS England commissions services for patients who have EDS
from specialist rheumatology centres. Some patients may also be seen in more local
services, commissioned by clinical commissioning groups, including rheumatology, physiotherapy,
and dermatology. NHS England also commissions a Complex EDS service through two expert
centres that ensures accurate diagnosis for patients where this has been difficult.
The Complex EDS service provides management plans for local care providers and communicates
which allows the local health care professionals to implement the recommendations
and monitor the patient’s progress.</p><p> </p><p>We currently do not hold figures
on the number of EDS diagnosis made in each of the last five years. However, Public
Health England’s National Congenital Anomaly and Rare Disease Registration Service
have been working to develop a rare disease registry which will collect prospective
data on EDS diagnosis in England.</p>
|
|
