CoIN Study (@coinstudykcl) 's Twitter Profile
CoIN Study

@coinstudykcl

Investigating the impact of Covid-19 on mental health and wellbeing in families of children with rare neurodevelopmental + genetic conditions @KingsIoPPN

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linkhttp://www.coinstudy.co.uk calendar_today13-05-2020 21:44:53

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55% of families reported there were significant positive changes for their family and community during the UK's first lockdown! To mark #positivemediaday we explored these positive changes. To see the full infographic, visit our blog: coinstudy.co.uk/blog

55% of families reported there were significant positive changes for their family and community during the UK's first lockdown! To mark #positivemediaday we explored these positive changes. To see the full infographic, visit our blog: coinstudy.co.uk/blog
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We're supporting #DeafblindAwarenessWeek 2021. Deafblindness occurs in around 400,000 people in the UK and there are >70 known causes of deafblindness, including rare syndromes that are represented in the CoIN Community, such as #CHARGESyndrome and #CorneliadeLangeSyndrome (1/2).

We're supporting #DeafblindAwarenessWeek 2021. Deafblindness occurs in around 400,000 people in the UK and there are >70 known causes of deafblindness, including rare syndromes that are represented in the CoIN Community, such as #CHARGESyndrome and #CorneliadeLangeSyndrome (1/2).
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Access resources on rare syndromes and deafblindness here: nationaldb.org/info-center/ov… #DeafblindAwarenessWeek (2/2)

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#COVID19 restrictions have bought about many challenges, including communication barriers for those who are #DeafBlind. Learn more about the impact for these individuals in this Deafblind UK blog: deafblind.org.uk/communication-… #DeafblindAwarenessWeek

#COVID19 restrictions have bought about many challenges, including communication barriers for those who are #DeafBlind. Learn more about the impact for these individuals in this <a href="/DeafblindUK/">Deafblind UK</a> blog: deafblind.org.uk/communication-…
#DeafblindAwarenessWeek
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Last month CoIN Study attended the International Time to Succeed Research Conference #ITSCRC2021 hosted by Tuberous Sclerosis Association. On our blog📖read about Jessica Martin's experience, including what it was like presenting to an international audience and receiving an #ECR award! 🎉 coinstudy.co.uk/blog

Maddie Groom (@mjgroom) 's Twitter Profile Photo

It's not too late to register for our 3rd CANDAL seminar! We will hear from experts including CoIN Study on the impact of the pandemic on families with neurodevelopmental conditions. See full program and register here: institutemh.org.uk/events/event/1… The Institute of Mental Health Uni of Nottingham School of Medicine #WeAreUoN

EDiTS Study (@edits_study) 's Twitter Profile Photo

There's still time to join a fantastic Research Festival hosted by Autistica this week! Find out more here: autistica.org.uk/get-involved/r… #AutisticaFestival

Cambridge Rare Disease Network (CamRARE) (@camraredisease) 's Twitter Profile Photo

Today our #UniqueFeet mums are making sure your #RareDisease voices are heard by taking to the airwaves!!! Good luck to Vaila on BBC Cambridgeshire talking about CV & CEV kids/‘freedom day’/vaccines & to Celia & Alison being interviewed for BBC East on #SEND provision in schools.

CoIN Study (@coinstudykcl) 's Twitter Profile Photo

Our Post-doctoral researcher Sarah Charles PhD is currently giving a fantastic presentation on the #coinstudy's preliminary findings at the CANDAL seminar series!

Our Post-doctoral researcher <a href="/SarahCharlesNC/">Sarah Charles PhD</a> is currently giving a fantastic presentation on the #coinstudy's preliminary findings at the CANDAL seminar series!
CoIN Study (@coinstudykcl) 's Twitter Profile Photo

At the end of last year, we asked parents for their feedback on the #CoINStudy survey. This feedback was then used to develop the CoIN Study final survey. Check out the parent feedback infographic on our blog below ⬇️ coinstudy.co.uk/blog

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📣Listen to Research Assistant Jessica Martin and Honorary Research Assistant Katie Robertson discuss their experiences as new researchers in conducting qualitative research ⬇️ coinstudy.co.uk/blog

CoIN Study (@coinstudykcl) 's Twitter Profile Photo

The #CoINStudy surveys closed in May 2021. We’ve now taken a look at the initial findings from the baseline survey. Check out some of our main findings from the first 2020 lockdown in the infographic on our blog below ⬇️ coinstudy.co.uk/blog

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Read about what we've been up to recently, our findings from the baseline survey, and our plans for the coming months in the CoIN Study Autumn Newsletter! Click the link below to access it: bit.ly/3zhHCHE Wishing you all the best from the CoIN Study team!

BEE_Study (@beestudy_) 's Twitter Profile Photo

❗️Calling parents of children aged up to 11 years old and diagnosed with epilepsy by 12 months old! We are inviting you to take part in the BEE-PP survey which is focused on priorities in #epilepsy research. Funded by King's College London and Wellcome: beestudy.co.uk/taking-part

CoIN Study (@coinstudykcl) 's Twitter Profile Photo

Although the #CoINStudy is coming to an end and so our updates may become less frequent, our team are busy working on analysing the surveys, so watch this space to find out more! In the meantime, we are wishing you happy holidays and all the best for 2022! ❄️⛄️

BEE_Study (@beestudy_) 's Twitter Profile Photo

🎁Last chances to enter our prize draw for the BEE-PP survey and win a £25 voucher🎁 The winner will be announced this Friday!! The survey will remain open till then so please get involved to be in with a chance of winning.🐝 Details on our website: beestudy.co.uk

EDiTS Study (@edits_study) 's Twitter Profile Photo

⬇️⬇️ Do you have a child aged under 16 and diagnosed with epilepsy by 3 years old? Fill out the BEE-Parent Priorities survey below to shape the direction of future research! bit.ly/3fifYWx