Increible insights from #spanish speaking patients/family re life participation in ckd at #ISNWCN muchos gracias! World Congress of Nephrology Brooke Huuskes Andrea Matus G Lilia Cervantes Allison Jauré adeera levin Ana Malvar Germaine Wong Andrea Viecelli Chandana Guha

Working towards understanding preferred outcomes and making research relevant for individuals living with kidney disease #SONG (standardized outcomes in nephrology) at #ISNWCN with Allison Jauré Andrea Matus G

RT:SONG-Tx #Consensus Workshop Report📖'Establishing a Core #OutcomeMeasure for Infection in #KidneyTransplant Recipients'🤝🏽Allison Jauré |Jonathan Craig | Elmi Mulller | #TransplantTwitter #MedTwitter #OpenAccess tinyurl.com/5yufwr5b

#lifeparticipation is a critically important outcome for trials in #ckd . Great to hear qual evidence on the patient perspective on life participation in #ckd from Nicki Scholes Andrea Matus G SONG at #dnt2023 Allison Jauré Jonathan Craig

Take part in a short survey about what cancer outcomes in kidney #transplant r important 2u!
👉🏼 tinyurl.com/9xmd4ssd
Germaine Wong TTS TSANZ Anita van Zwieten Nicki Scholes AKTN BEATCKD Andrea Viecelli Jonathan Craig Allison Jauré Transplant Australia

#PROs and #PROMs as endpoints in clinical trials, to facilitate assessment of the patient’s health perspectives: perceptions of life participation, medication adherence, disease symptoms, and therapy side effects in the context of #KidneyTransplant bit.ly/3ahYNC6 2/10

Great discussion on est. a core outcome measure for infection in kidney transplant recipients Elmi Mulller Andrea Viecelli Karine Manera Andrea Matus G Jonathan Craig Matty Hempstalk Nicki Scholes Chandana Guha Simon Carter Brooke Huuskes David W Johnson Christoph Wanner

Only ~5% trials in CKD report quality of life #SONGCKD Andrea Matus G Sociedad Chilena de Nefrología eduardo lorca Magdalena Madero Jonathan Craig @allisontong1 Sautenet Bénédicte Ian de Boer Dani gallego David C Wheeler Laura Sola adeera levin

#VALID Great ideas discussed at the latest VALID GSC led by Andrea Viecelli
International team dedicated to making a difference by validating a standardized core outcome measure for haemodialysis trials SONG
ArmandoTeixeiraPinto
Charmaine Lok
@allisontong1
Carmel Hawley

Great insights from patients/health professional around the 🌎 to establish core outcomes for trials in chronic kidney disease! Andrea Matus G Magdalena Madero Jonathan Craig Wolfgang C. Winkelmayer @allisontong1 Andrea Viecelli Yeoungjee Cho Mary Beaucage eduardo lorca David C Wheeler Sally Crowe

➡️ Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease kidney-international.org/article/S0085-…

A recent article in CO Neph & Hypertens summarizes the current approaches to assessing #QualityOfLife in people with Chronic Kidney Disease, and highlights future areas for improvement. SONG

➡️ bit.ly/3ngmKOK

Comet Initiative COMET newsletter: bit.ly/3CpJ911

Includes:
OMERACT filter 2.2 bit.ly/3AmmBMG
SONG progress bit.ly/3fYTZSf
Cochrane Skin updates bit.ly/3iuCg6x
Caroline Terwee COSMIN update bit.ly/2X6a5CT

Patient and caregiver perspectives on blood pressure in children with chronic kidney disease @allisontong1 Jonathan Craig SONG academic.oup.com/ndt/advance-ar…

Kevin J. Fowler Principal The Voice of the Patient Manasi Bapat MD, FASN, FNKF🇮🇳🇺🇸 There we go - 3rd tier in patients' priorities SONG #NephTrials

2️⃣0️⃣2️⃣1️⃣ is the year of ‘Living Well with #Kidney #Disease ’: an uncompromisable goal of all foundations, patient groups and professional societies to increase #education and #awareness of #CKD @allisontong1 SONG ow.ly/7Tf550DSfGs

Core Outcomes for #ADPKD

buff.ly/2C42DxO

Yeoungjee Cho @allisontong1 Jonathan Craig Kevin J. Fowler Principal The Voice of the Patient Helen Coolican Tess Harris ((in need of another kidney sadly)) Talia Gutman Andrea Viecelli David W Johnson Eric Au Ragada El-Damanawi charlottelogeman Angela Ju Karine Manera Michel Chonchol Sautenet Bénédicte SONG

The SONG have of course reported on patient priorities here songinitiative.org/projects/song-… #NephTrials

2020 Editors’ Choice Article: Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health. Using consistent, patient-centered terminology to communicate important aspects of kidney health may improve patient autonomy, satisfaction & outcomes bit.ly/CJN00900120