SONG-PKD

Join the SONG-PKD Delphi Panel – Tell us what matters to you!

All patients, caregivers, and health professionals are invited to join the international SONG-PKD Delphi panel to help gain agreement on what outcomes should be included in research in autosomal dominant polycystic kidney disease (PKD). In Round 1, you will be asked to rate the importance of 41 outcomes. We will launch Round 2 later this year, in which you will see a summary of the group results. If you would like to take take part, please click on the survey link below to begin!

귀하는 다낭신질환 환자, 가족구성원, 의료인 및 관계자에게 있어 다낭성 신질환에서 어떠한 결과가 중요한지 밝히고자 하는 SONG-PKD 델피 설문조사에 참여하시도록 초대되셨습니다. 첫번째 설문조사에서는 41개의 결과들에 대해 중요도에 대한 평가를 하실 것이며, 이후 있을 두번째 설문조사에서는 첫번째 설문조사에서 취합된 결과를 볼 수 있을 것입니다. 델피 설문조사의 참여를 희망하시면 아래의 한국어 설문조사 링크를 클릭하시고 진행하여 주십시오!

Tous les patients, les aidants et les professionnels de santé sont invités à se joindre au panel international SONG-PKD Delphi pour parvenir à un accord sur les critères de jugement qui devraient être inclus dans la recherche sur le polykystos rénale autosomique dominante (PKD). Au premier tour, on vous demandera d’évaluer l’importance de 41 résultats. Nous lancerons le deuxième tour plus tard cette année, dans lequel vous verrez un résumé des résultats du groupe. Si vous souhaitez participer, cliquez sur le lien ci-dessous pour commencer!

English

Click here to start the SONG-PKD Delphi Survey!

Korean / 한국어

설문 조사를 시작하려면 여기를 클릭하십시오!

French / français

Cliquez ici pour commencer le questionnaire!

Why develop core outcomes in polycystic kidney disease?

Polycystic kidney disease (PKD) affects approximately 12 million people worldwide. PKD is an irreversible life-threatening genetic disorder and is a major cause of end-stage kidney disease. Research in PKD aims to improve outcomes for patients yet they are rarely involved in outcome selection.

Identifying core outcomes

The standardised outcomes in nephrology – polycystic kidney disease (SONG-PKD) project will establish core outcomes that are based on the shared priorities of patients with PKD, their family members, clinicians, researchers, and policy makers. Eight focus groups using nominal group technique will be conducted with patients with PKD and their caregivers who will be asked to identify and rank outcomes that are important to them, and describe reasons underpinning their priorities. An international Delphi consensus survey will conducted with stakeholders, including patients, caregivers, and health professionals, to distil and generate a prioritised list of “core outcomes” to include in trials, other forms of research and clinical care.

SONG-PKD will establish a new core outcome set in PKD. This will help to ensure that research is measuring and reporting outcomes that are meaningful and relevant to patients with PKD, their family, and clinicians; to improve patient-centred care for people living with PKD.

SONG-PKD Steering Group

Gopala Rangan (Chair) | The University of Sydney, Australia
Albert Ong | University of Sheffield, United Kingdom
Arlene Chapman | University of Chicago, United States
Curie Ahn | Seoul National University Hospital, South Korea
Helen Coolican | PKD Foundation of Australia, Australia
Juliana Tze-Wah Kao | Fu Jen Catholic University Hospital, Taiwan
Kevin Fowler | Kidney Health Initiative, Patient Family Partnership Council; President, The Voice of the Patient, United States
Ron Gansevoort | University Medical Center Groningen, Netherlands
Ronald Perrone | Tufts Medical Center, United States
Tess Harris | PKD International, United Kingdom
Vicente Torres | Mayo Clinic, United States
York Pei | University of Toronto, Canada

Project coordinators: Yeoungjee Cho, University of Queensland; Talia Gutman, The University of Sydney; Benedicte Sautenet, University of Tours

Project updates

The SONG-PKD protocol has been published in Trials.