Ebony Richardson
@EbonyR_GC
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PhD Candidate UTS | Research Associate Genetic Counsellor | She/her | Opinions my own
Joined March 2019
Research Thursday today looks at Outcomes of Importance to Patients in Reproductive Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set https://t.co/4q3v7KVHLU
@EbonyR_GC; @mcewen_alison; @jacobs_chrisj; @TobyNewtonJohn1; @Ashley_Crook @UTS_GC #GeneChat
mdpi.com
There is significant heterogeneity in the outcomes assessed across studies of reproductive genetic carrier screening (RGCS). Only a small number of studies have measured patient-reported outcomes or...
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It's RESEARCH THURSDAY! Our fave day of the week where we plug a new paper from one of our members 🎉🎉🎉 This week we have @_Steph__White_ with her latest paper on discussions about genetics with palliative patients and their families out in @ejhg_journal @UTS_GC #GeneChat
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Article: Outcomes of Importance to Patients in Reproductive #Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set by Ebony Richardson from University of Technology Sydney https://t.co/v84FmAiBt0
#mdpijpm via @JPM_MDPI
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My next PhD publication! Identifying patient-led outcomes has been a key finding of my work. This and other great papers in the recent special issue of JPM! https://t.co/moYRyKLJGZ
#mdpijpm via @JPM_MDPI @jacobs_chrisj @mcewen_alison @TobyNewtonJohn1 @Ashley__Crook
mdpi.com
There is significant heterogeneity in the outcomes assessed across studies of reproductive genetic carrier screening (RGCS). Only a small number of studies have measured patient-reported outcomes or...
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Another piece of my PhD work out in the world!In this review we compared outcomes from qualitative studies to those identified in quantitative studies, and showed that patients discuss outcomes that are important to them that might not otherwise be assessed.
What should be in a core outcome set for reproductive genetic carrier screening? https://t.co/MlUzjbfA6f
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In our NEW PREPRINT, we show the value of cardiac genetic testing BEYOND family screening in our 18 years of specialised clinic experience. Awesome work by @FergusS13 @neeshakrishnan #cardiogen #CardioTwitter #GeneChat
https://t.co/ZIg4GFfs0N /1
medrxiv.org
Background The diagnostic yield of genetic testing for inherited cardiac diseases is up to 40% and primarily indicated for screening of at-risk relatives. Here we evaluate the role of genomics in...
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Such an insightful and appreciated commentary into my recent review published in @ejhg_journal As a PhD student imposter syndrome can be a real challenge, this validation of my work by the likes of @lisadive and @biomedethics really brightened my day!
New paper out today with @biomedethics ! Commentary in @SpringerNature @ejhg_journal on ethical underpinnings of outcomes for reproductive genetic carrier screening, and why we need to pay attention to what matters to patients:
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So excited to have this piece published, laying the groundwork for the rest of my PhD! @jacobs_chrisj @mcewen_alison @Ashley__Crook @TobyNewtonJohn1
The need to standardize outcome measures in evaluating reproductive genetic carrier screening https://t.co/XVtyY7Mshn
#reproductivegenetics #Genetics
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My systematic review is out! Results highlight the varied approaches to research on reproductive genetic carrier screening (RGCS) and proposes the development of a core outcome set to improve our ability to draw robust conclusions on the outcomes of RGCS
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I'm excited to announce the publication of my first PhD paper! A protocol for the development of a core outcome set to address challenges that arise due to outcome heterogeneity in reproductive genetic carrier screening research. Read here: https://t.co/EpX3uoBhQl
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We are still recruiting for this study and are looking for more participants with normal/low risk results!
Researchers @UTS_GC are interested in hearing from individuals or couples who have received normal/low risk results from reproductive genetic carrier screening. Follow the link to register your interest https://t.co/GTyirKeErO
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Excited to share our preprint on using co-design to develop a support intervention for families after sudden cardiac death - this is the first step to providing these families with better support. @jodieingles27 @DrKGardner @CSHeartResearch @mcewen_alison @GCAustralasia #gcchat
Co-designing an online COmmunity suPporting familiEs after Sudden Cardiac Death (COPE-SCD) in the young https://t.co/60hbA6Dp0W
#medRxiv
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I've started recruitment for an exciting project as part of my PhD! If you know of anyone who has had reproductive genetic carrier screening that may be interested in participating in a focus group or interview, please spread the word!
Did you have genetic testing when planning to start your family or during pregnancy? Researchers @UTS_GC are interested in hearing from individuals or couples who have had reproductive genetic carrier screening. Follow the link to register your interest https://t.co/GTyirKeErO
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Did you have genetic testing when planning to start your family or during pregnancy? Researchers @UTS_GC are interested in hearing from individuals or couples who have had reproductive genetic carrier screening. Follow the link to register your interest https://t.co/GTyirKeErO
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New @ranzcog guidelines usher preconception carrier screening into the public eye and genetic counsellors will be key in ensuring responsible implementation. This is an exciting time to be pursuing a PhD in this area! #GCchat #carrierscreening
RANZCOG's Genomics Advisory Working Group & Women's Health Committee now recommends that every woman planning a pregnancy or in their first trimester should be given information about preconception carrier screening:
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