Northwick Park Research Project

Northwick Park Research

Research Database Project

In June 2019, EDS UK and Annabelle’s Challenge were pleased to announce that we are co-funding researchers at Northwick Park Hospital in London to help them create one of the largest databases of information about vascular EDS in the world. The project started in October 2019 and will initially run for 12 months.

The researchers have been pulling together the large amounts of medical information they have from the vascular EDS (vEDS) patients they have seen at Northwick Park over several years. They want to get it into an electronic format in one easily accessible place so that it can more easily be used for research. This will also help to collaborate with other research teams in the UK and internationally.

It took longer than expected for the team to select the best database to use. They spoke to other research groups they work with to help make the decision and have now started to get the information into the new database. While going through the information, the team has identified two sub-projects they will work on during the funding period. One will look at pregnancy in vascular EDS - to learn more about the birth, delivery and post-delivery period of individuals with vEDS and the other will be on the management of vascular complications in vEDS to develop evidence-based recommendations for treatment.

We are very proud to be funding this important work and look forward to sharing further updates when they are available. Thank-you to all of the donors and fundraisers who have made this work possible.

7 May, 2019: Announcement

Annabelle's Challenge is delighted to announce that we and The Ehlers-Danlos Support UK are jointly funding the creation of one of a vascular Ehlers-Danlos syndrome (vEDS) research database.

The funding has been awarded to the EDS National Diagnostic Service at Northwick Park Hospital and is an important step towards undertaking future research into vEDS. The aims of the research are to:

1. Identify the clinical and genetic data required for research and formalize this data in order to gain further insights into the course of the disorder

2. Set up a clinical database in order for the significant amount of data collected since 2009 by Northwick Park to be adequately interrogated and contribute to possible international databases in the future

3. To increase (inter)national collaboration with other vEDS research groups in order to create possibilities for patients to participate in future research including clinical trials.

The EDS National Diagnostic Service was set up in 2009 between London and Sheffield and is currently commissioned to see 200 patients per year per service. They see one of the largest cohorts of both adults and children with vEDS internationally and hold a significant amount of clinical data including follow-up data on each individual.

Mark Redhead, Chair of the Ehlers-Danlos Support UK, said “I am delighted that EDS UK is supporting this research in collaboration with Annabelle's Challenge. We hope that by formalising and analysing one of the largest vEDS databases in the world we will gain further insights into what causes vEDS, inspire further research projects across the world, and get us closer to finding a cure. It shows what role patient charities can take in working in partnership with clinicians and researchers for patient benefit. At EDS UK we want to be doing a lot more work like this and we have a number of projects being taken forward in 2019”.

Jared Griffin, Founder and CEO of Annabelle’s Challenge commented “This is a major milestone for Annabelle’s Challenge as we progress towards research of vascular EDS in the UK. We are delighted to be in a position to co-fund this important project with Ehlers-Danlos Support UK and it is great to see both charities working closely together supporting the vascular EDS community.”

Consultant clinical geneticists Dr Fleur van Dijk and Dr Neeti Ghali have been awarded £24,343 for 12 months. On receiving the funding they said “We are so pleased and enthusiastic to receive this funding! The idea of starting to gather the data that we have obtained in the EDS service since 2009 so that we can provide more information and advice for our patients and families is a really exciting and promising step.”

We are delighted to be able to jointly fund this project and further develop the relationship we have with The Ehlers-Danlos Support UK and the EDS National Diagnostic Service. A huge thank you to everyone who has donated to support vEDS research. This project would not be possible without you.