Ellen Ewer

BSc, MSc, MCSP, MAPCP. Specialist Paediatric Physiotherapist. Honorary research associate UCL, currently validating ‘The Spider’. She/her.

[Ellen Ewer @EllenEwer]

Final stage of the Spider validation! We are now assessing if the Spider can measure change over time. Hoping for as many volunteers as our last study (10,000!). So grateful for the HSD/hEDS community and their contribution to research 🦓 @jvsimmonds01
https://t.co/lxpgKpVDHW

[Prof Jane Simmonds @jvsimmonds01]

Proud to present the validation of the Spider tool for symptomatic hypermobility on behalf of our research team and patients @EllenEwer @VickiBusbyPT @ShoulderAcademy Inge De Wandele @thecsp #Physio24

[Prof Jane Simmonds @jvsimmonds01]

We are excited to share our adult hypermobility Spider validation paper. https://t.co/uDKrmVohTG. Thank everyone who participated. Thank you @PPEFcharity @ehlersdanlosuk @TheEDSociety. Brilliant research by @UCLchildhealth alumni @EllenEwer and @Ingedewandele and team!

[Ellen Ewer @EllenEwer]

QR codes below. Scan for quick survey access. Separate surveys for adults and adolescents, 18 year olds can choose either! @jvsimmonds01

[Ellen Ewer @EllenEwer]

Final stage of the Spider validation! We are now assessing if the Spider can measure change over time. Hoping for as many volunteers as our last study (10,000!). So grateful for the HSD/hEDS community and their contribution to research 🦓 @jvsimmonds01
https://t.co/lxpgKpVDHW

[Ellen Ewer @EllenEwer]

Parts 2 and 3 are now live! We’ve had an incredible response so far and would appreciate your ongoing support. Each survey asks about different symptoms you may experience.
Survey 2: https://t.co/p0wI55iM4Z
Survey 3: https://t.co/8d51RbmkyT

[Ellen Ewer @EllenEwer]

Very exciting - we are now testing ‘the Spider’ with adults with HSD/hEDS. The first stage of the study is now live for adults aged between 18 and 65 with and without HSD/hEDS. Please participate if able and share with others! https://t.co/V5NVZ9vd6c @jvsimmonds01 @HMSACharity

[Ellen Ewer @EllenEwer]

The next step of the Adult Spider validation is now live! Part 3 is also live - if you are able to complete all 3 surveys we would be so grateful. Links below 🕷️
Part 1: https://t.co/cWh82FUocZ
Part 2: https://t.co/p0wI55iM4Z
Part 3: https://t.co/8d51RbmkyT
@jvsimmonds01

[The Ehlers-Danlos Society @TheEDSociety]

🕷️The Spider has been designed to assess the impact of various symptoms (or problems) experienced by people with #hypermobilityspectrumdisorder or #hypermobileEhlersDanlossyndrome

🟣Researchers need participants 18-65 with #hEDS or #HSD to take part https://t.co/1VuAHfULMZ

[Ellen Ewer @EllenEwer]

@Yrrepmot @jvsimmonds01 @HMSACharity I absolutely agree - researching the cause and treatment options is certainly a high priority, but we do need tools measuring symptoms in order to better understand HSD/hEDS and assess outcomes of treatments to help us know what is successful

[Ellen Ewer @EllenEwer]

@Yrrepmot @jvsimmonds01 @HMSACharity Before we can use the Spider in clinics we need to make sure it works correctly - which is why we are doing this study. We welcome any feedback and opinions. It is exciting to us, as we hope the Spider will make receiving individualised care much easier for people with HSD/hEDS

[Ellen Ewer @EllenEwer]

@Yrrepmot @jvsimmonds01 @HMSACharity 2/3 A completed Spider questionnaire creates a diagram showing the impact of each individuals symptoms, which will help people communicate their symptoms more easily with healthcare teams to make sure that they receive care that focusses on what is impacting them the most

[Ellen Ewer @EllenEwer]

@KristenesTweets @jdibon @jvsimmonds01 @HMSACharity Yes please - we are hoping for people to participate from all over the world!

[Ellen Ewer @EllenEwer]

@jdibon @jvsimmonds01 @HMSACharity Thanks Jeannie - so excited that it’s time to trial with adults after successful validation with adolescents 🎉

[Ellen Ewer @EllenEwer]

Fab to catch up with familiar faces at #WorldPhysio2023 @uclphysio are everywhere!

[Ellen Ewer @EllenEwer]

Huge congrats to @SueUnaWard for winning the outstanding platform award for her presentation on her scoping review of clinical characteristics of symptomatic hypermobility at #WorldPhysio2023. So well deserved for such excellent work 👏

[Ellen Ewer @EllenEwer]

Great talk from @carol_mccrum about the rheumatology physio capabilities framework 👏 #worldphysio2023

[Ellen Ewer @EllenEwer]

Such an incredible experience - my first World Physio Congress! Delighted to have presented our Spider work, and to learn about all the latest Physiotherapy research. Such an inspiring weekend #WorldPhysio2023

[Prof Jane Simmonds @jvsimmonds01]

Fantastic to hear about the Spider symptom tool ⁦@WorldPhysio1951⁩ by our wonderful ⁦@EllenEwer⁩ ⁦@uclphysio⁩ ⁦@UCLchildhealth⁩. Thanks to ALL who have helped ⁦@ehlersdanlosuk⁩ ⁦@HMSACharity⁩ ⁦@TheEDSociety⁩ ⁦@CentralHealth⁩

[Prof Jane Simmonds @jvsimmonds01]

This is a very important step in bringing the multisystem Spider measure into practice. We need young people 13-18yrs with and without hypermobility to complete this. Please share. @UCLchildhealth @TheEDSociety @HMSACharity

[Prof Jane Simmonds @jvsimmonds01]

If you are planning to study on the UCL MSc paediatric or musculoskeletal physiotherapy or just want to hear their research sign up for this event. You will hear from fabulous alumni including @DrCMAlexander @christiniedougl @EllenEwer Elaine Chong and Becca Spear

[The Ehlers-Danlos Society @TheEDSociety]

Special thanks to physio @EllenEwer & all #AlliedHealthProfessionals who this year have supported their patients with #EhlersDanlosSyndrome or #HypermobilitySpectrumDisorder around the world, carried out research, and joined EDS ECHO - giving hope for the future! 1/3