




We are delighted to announce our first research study which will commence in September with recruitment taking place this month! Our researcher is Leanne Barrett MSc, a Genetic and Genomic Counselling Student assigned to Annabelle’s Challenge by Cardiff University working closely with Claire Green at the NHS EDS National Diagnostic Service in Sheffield.
This study aims to explore the psychosocial issues faced by patients suffering from Vascular Ehlers Danlos Syndrome (vEDS). Most of the research studies done in this area focus on other subtypes of EDS, with none paying specific attention to vEDS.
Psychosocial issues relate to factors that impact an individual’s psychological and social functioning. By interviewing patients with vEDS, we hope to gain a deeper understanding of the vEDS patient experience, which may in turn, improve the support available to patients provided by healthcare professionals, families and friends, as well as set a base for additional research to take place.
Recruitment is open to AC UK members aged 18 or over who have a confirmed clinical diagnosis of vEDS.
We will be contacting members directly with full details on how to sign up.
If you would like to take part and receive the sign up forms sooner please email research@annabelleschallenge.org or visit https://www.annabelleschallenge.org/veds-psychosocial-resea… for further information.