SearchEDS study with Symprove™
11.03.26 PLEASE NOTE – DUE TO OVERWHLEMING DEMAND AND APPLICATIONS, RECRUITMENT IS NOW CLOSED
Thank you to everyone who applied.
PARTICIPANT INFORMATION IRAS Reference Number: 364450
Please read this information before you decide whether you would like to take part. The application link is at the bottom of the page.
Study title: A single-arm, decentralized, real-world evidence pilot study to assess the impact of Symprove™ in people with Ehlers-Danlos Syndrome (EDS)
Invitation and brief summary
EDS UK has been asked to collaborate and recruit for a new scientific study run by Symprove. We are inviting you to take part in a research project where Symprove will assess the impact of a gut supplement in people with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) over 12 weeks. You have been invited because EDS UK has identified you as a potential candidate to participate in this research. We aim to recruit a minimum of 150 participants for this research through EDS UK.
Please read this information before you decide whether you would like to take part. You need to live in the UK (England, Scotland Wales and Northern Ireland) and be over 18 to take part in the study.
What’s involved? The background and purpose of the research
Gastrointestinal symptoms are common in people. In fact, 30-96% of people with hypermobility disorders experience at least one gastrointestinal symptom. Disorders of gut‐brain interaction (DGBIs) are also common, particularly functional dyspepsia.
There is good evidence to suggest that targeting the gut microbiome can support the management of symptoms in Irritable Bowel Syndrome (IBS) and gastroesophageal reflux disease (GERD). However, further research is needed to understand the relationship between the gut microbiome and EDS and HSD, and to investigate whether food supplements could improve the quality of life of people with EDS and HSD by supporting symptom management. This will be the first study collecting data on the impact of a food supplement called Symprove in people with EDS and HSD.
What is Symprove™?
Symprove™ is a water-based solution that contains billions of live and active bacteria. The water-based formula makes sure that the bacteria are alive, active and ready to help stimulate the good bacteria already in the gut. Symprove is a food supplement backed by over 15 years of research and is already available to buy..
It has been tested across many different clinical groups (e.g. IBS, IBD, Parkinson’s disease, multiple sclerosis, long COVID) including vulnerable groups (e.g. children with rare dermatology conditions and Down’s syndrome) with no serious adverse events reported.
More information about Symprove™ can be found here. Symprove ingredients are here
Am I eligible to take part?
If you are interested in taking part in this study, please complete the screening questionnaire. This will give us the information to know if you can take part in the study.
Do I have to take part?
No. It is entirely up to you to decide. If after being offered a place, you do not want to take part that’s ok. Your decision will not affect the quality of care you receive. If you do decide to take part you are free to withdraw at any time during the 12-week study period, without giving a reason, by contacting EDS UK at research@ehlers-danlos.org. If you decide to withdraw, we will not send you any further study surveys but will keep any previously collected data.
What happens during the study?
If you decide to take part in this study and are accepted, we will send you a link to an online health survey, which includes questions about you, your medications, medical conditions and symptoms. The survey will take approximately 10 minutes to complete. You must complete the survey before you start taking Symprove™, and again at 6 weeks and then a final time at 12 weeks after you started taking it. The survey will be automatically sent to your email address at these time points. You should complete the surveys within 72 hours from receiving the link. We will send you email reminders or contact you by phone, if you do not complete the surveys.
Once the baseline (initial) survey is completed, it will give you a code and instructions to order a free 12-week course of Symprove™ through the Symprove website to take 70 ml once a day in the morning on an empty stomach. This code only works once so please do not share it with anyone as it may mean you cannot get your course.
If you complete your survey late, we will not automatically exclude you from the study; however, we can only include your data in the analyses if you have completed the Baseline survey and at least one of the follow-up surveys.
What are the possible benefits of taking part?
Although you may not receive any health benefit from taking part, research like this can improve our understanding of EDS and HSD and help develop new ways to manage it in the future.
All participants who complete the 12 week study will receive a code for an additional free 12-week course of Symprove™ if they would like to continue after the study as a thank you for your time.
What are the possible disadvantages and risks of taking part?
A small number of people may experience mild gut disturbances (such as bloating or change in bowel habit) when they first start taking Symprove™. As with any nutritional intervention the gut needs a little time to adapt. Disturbances will usually resolve in the first few weeks.
How will we use information about you?
We will need to use information from you for this research project.
This information will include your:
- Name
- Contact details
People will use this information to do the research or to check your records to make sure that the research is being done properly.
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.
Symprove Ltd is the sponsor of this research.
Symprove Ltd is responsible for looking after your information. We will share your information related to this research project with the following types of organisations:
- Research organisations
We will keep all information about you safe and secure by:
- Using password protected documents and file sharing systems
- Removing your name and contact details from our records as soon as they are no longer required
What if there are any problems?
If you have any questions about this study, please contact EDS UK at research@ehlers-danlos.org.
If you experience any health problems during the study or issues with Symprove, please contact Symprove at research@symprove.com. If you experience any side effects with Symprove, you can also report these in the next study survey (at 6 or 12 weeks). If you experience any issues with the study surveys, or you would like to withdraw from the study, you can contact EDS UK at research@ehlers-danlos.org.
If your survey data suggests that you may be significantly distressed, EDS UK may contact you to discuss. You can also contact research@ehlers-danlos.org if you feel distressed or anxious.
If you would like to make a complaint, please contact EDS UK at research@ehlers-danlos.org. However, if you would like to complain to someone who is not involved in this study, please contact Symprove’s General Data Protection Regulation (GDPR) officer Keith Budden (keith@ensurety.co.uk).
What if I take other supplements or medications?
You should not take any probiotics or prebiotics supplements (e.g. Bimuno) or yogurts containing probiotics (e.g. Yakult, Actimel) during the study. You can take Symprove with any other supplements you are already taking (e.g. vitamins, minerals, protein powder, fish oil) . Many people take it alongside medications too. If you are worried about using any of your medications with Symprove, please discuss with your doctor.
Please note that you should maintain your USUAL dietary and lifestyle habits while taking part in the study, as this could have an impact on your EDS symptoms. Do not start taking new food supplements, such as probiotics or prebiotics.
What happens after the study has finished?
The findings from this study will be shared on EDS UK’s website (https://www.ehlers-danlos.org/) and through their regular communications to their email database for those who have opted in to communications from them.
What will happen to information collected about me during the study?
Symprove Ltd will store your name and email address so that we can send you the product. Once the study has finished, Symprove Ltd will delete all your personal details. The data collected using the online surveys will not include any personal information.
Who is organising and funding the research?
This study is organised and funded by Symprove Ltd.
What happens next?
You can ask any questions you may have about the study by contacting the EDS UK at research@ehlers-danlos.org. If you would like to take part, please click on the link on the study invitation email to check if you meet the study criteria. If you are eligible, we will ask you to provide your consent and register your details.
Thank you for reading this information and for considering taking part in this research.
Click here to fill in the application form – this link is now closed
You can find a video on Youtube to help you fill in the application form if you need it here
You can also find a video explaining the information on this webpage here
Timeline:
Applications open 3rd March – fill in the screening questionnaire (closes 20th March, but may close earlier if over subscribed)
10th March – you will be contacted by this date at the latest if you have been succesful. You will be sent an online consent form to sign and once you have signed, you will be sent a link to complete the Baseline questionnaire. At the end of this questionnaire will be the information to order your 12 weeks of Symprove products.
Order delivered – begin taking your Symprove
6 weeks – you will receive your 6 week survey to complete
12 weeks – you will receive your final (12 week) survey to complete
Final 12 week survey completed – we will send everyone who has completed the 3 surveys a code to order a further 12 weeks supply free of charge as a thank you.
Autumn/Winter 2026 – results will be published in Winter Fragile Links and on our website.