STAR Family Study

Starting a family when you have an autoimmune rheumatic disease: The STAR Family Study. Led by Cardiff University and funded by a Wellcome Trust ISSF grant.

[Dr Denitza Williams @denitzawilliams]

One of my own, from @STARFamilyStudy working with @DrAimeeGrant @Nannon_Phillips @AnnMTaylor61 and colleagues. Highlighting the need for person centred care and support for women #breastfeeding

[Dr Denitza Williams @denitzawilliams]

@IonaThorne @RheumatologyUK @MariaMouyis This is great to see! Our @STARFamilyStudy highlighted the need for person centred care for women when making pre-conception decisions.@FamiliarStudy is also following on from this work, looking at the development of a SDM intervention.@Nannon_Phillips @ZoeAbbott83

[Tim Pickles @PicklesTim]

Great to see the @STARFamilyStudy presented at #ICCH2020 by @denitzawilliams
More RA research from @PRIMECentre and @CTRCardiffUni
@NRAS_UK
#OurMindsRAPriority
#RAAW2020

[Dr Denitza Williams @denitzawilliams]

Ready to present #ICCH2020 Session 0.15 5.15-6.15pm sharing @STARFamilyStudy study breastfeeding findings, reflecting on need for person centred care in infant feeding options #decisions #sdmresearch @PRIMECentre @Nannon_Phillips @BethanPell @DrAimeeGrant

[Tim Pickles @PicklesTim]

It is @NRAS_UK Rheumatoid Arthritis Awareness Week 2020 #OurMindsRAPriority so I've written this blog on the Rheumatoid Arthritis research taking place within
@CTRCardiffUni
@ResearchWales
@ErnestChoy1
@BethanPell
@DaveGuk87
@Nannon_Phillips
https://t.co/N6lyXn8tgf

[MSc Survey Research - Chronic Fatigue Syndrome @MscChronic]

Online survey regarding Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and starting or enlarging a family is looking for individuals who can become pregnant aged 18-50 to take part! Please share this and feel free to take part from the link: https://t.co/xtsjZrHDrD #CFS #ME

[RDCS SE Wales @RDCS_SEW]

*New* blog from @CTRCardiffUni's @BethanPell:

Visual Timeline Interviews Over The Telephone: Findings From @STARFamilyStudy

@BethanPell
@Nannon_Phillips
@denitzawilliams
@DrAimeeGrant
@PRIMECentre

[Kate Wiles @DrKateWiles]

Pregnancy and Renal Disease Guidelines. Open access. Thanks team @LucyChappell2 @drmatthall @kidneydoc101 @nelson_piercy @KateBramham @philip_webster @renalmidwife @whybrow_rebecca @dmukhe02 @germinMohamed8 https://t.co/A3FhfD13kh

[FAMILIAR Study @FamiliarStudy]

Patient stories giving insight into different experiences of #pregnancy and #InflammatoryArthritis in the news: https://t.co/WfIWcwIZht
#Arthritis #Rheumatoid #Psoriatic #JIA

[Arthritis UK @arthritisukorg]

Raising a family can be hectic, rewarding and at times, tiring. But what if you throw arthritis into the mix? Catherine, who is a mother of three, shares her tips on how to manage the pain & enjoy quality time with your family. Read more: https://t.co/oG52SPj6iu

[⚫ Zoë Abbott (she / her) @ZoeAbbott83]

All. The. Time.
That said, before I got #RA I knew nothing about inflammatory arthritis (IA). Knowledge is power. If you have/know someone with IA of child bearing age (puberty-50yrs), you might want to follow @FamiliarStudy, looking at improving IAs & pregnancy/planning.

[FAMILIAR Study @FamiliarStudy]

Patient stories of #arthritis & #pregnancy #FamilyPlanning from @Arthritisie - great resource! Thank you @Clare_NRAS @NRAS_UK for sharing.

#Rheumatoid #Psoriatic #AxSpa #Ankylosing #JIA #InflammatoryArthritis #contraception #conception #videos #stories

https://t.co/tP2FHHPk4q

[FAMILIAR Study @FamiliarStudy]

For anyone who missed this talk by @WeAreARMA, aimed more at staff than patients, an interesting, informative talk, demonstrating importance of medication, the right medication, stable disease, and patient-clinician conversations when family planning with inflammatory arthritis.

[Arthritis UK @arthritisukorg]

Are you 18-25 and living with arthritis or a related condition? We're looking for people to help shape the future of our work with young people and families. Find out more about joining our Young People Versus Arthritis Advisory Panel and apply here: https://t.co/gmOGqKDmpH

[FAMILIAR Study @FamiliarStudy]

Whether relating to women with inflammatory arthritis, other chronic conditions, or none - what would you add to this list?
1/2

[FAMILIAR Study @FamiliarStudy]

...this seems quite key to us!
Many of the other items on this list as important to making the environment for women to have full autonomy, andbthe space and confidence to make informed choices.
2/2

[⚫ Zoë Abbott (she / her) @ZoeAbbott83]

Excited that @FamiliarStudy will soon open sites to interview #patients #partners & #staff to learn their experiences of #rheumatology services in UK, @UHBristolNHS @CV_UHB & @SwanseabayNHS!
@STARFamilyStudy @Nannon_Phillips @denitzawilliams #CoProduction #InflammatoryArthritis

[Midwifery Journal @MidwiferyJnl]

New Open Access paper! “Nobody knows, or seems to know how rheumatology and breastfeeding works”: Women's experiences of breastfeeding whilst managing a long-term limiting condition – A qualitative visual methods study https://t.co/5bxGgocvPO

[Marian Knight MBE @Marianfknight]

We particularly need responses from midwives, doctors and nurses in Scotland, Wales and Northern Ireland so we can make sure the final research priorities are relevant to the whole of the UK.

[Dr Gemma Pearce @GemmaSPearce]

@ehlersdanlosuk Here's our published review of care considerations during pregnancy, birth & beyond for people with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders @SallyPezaro @DrEReinhold #EDSmaternity https://t.co/0bkwGN7FGR