Establishing the Top 10 Research Priorities for the Management of Parkinson's Disease - Protocol
Creators: name: Bowring, Francesca
name: Woodward, Charlotte
name: Hanff, Anne-Marie
name: Sulzer, Patricia
name: Liepelt-Scarfone, Inga
name: Krüger, Rejko
name: Hu, Michele
Publisher: name: Zenodo
Year: 2018
Subjects: Parkinson
Research Priorities
PD
consensus
Delphi
Priority Setting

description: Establishing the Top 10 Research Priorities for the Management of Parkinson’s Disease. Study protocol of an international cross-sectional survey in the frame of the CENTRE-PD project. <strong>Objectives</strong><strong>:</strong> What are the Top 10 Research Priorities of PwP, friends/families, clinicians and allied health care professionals? How do research priorities of health care professionals and researchers align with people with Parkinson’s? Are there any differences in priorities across international geographical locations? Are there differences in priorities based on confounding factors such as socioeconomic status and duration of disease? Is there a correspondence between the Top 10 Research Priorities (patients and caregiver ratings) and the clinical profile of PD patients (EKUT data only)? Alignment of research priorities with research projects by searching of research submitted for ethical approval, registered in clinical trial registries or published in bibliographic databases with the deduced priorities; Develop guidance to form future systematic review questions important to PwP; What, if any, differences are there between the results of simple rating (round 1) prioritisation, Delphi panel prioritisation and NGT with and without healthcare professionals? <strong>Background:</strong> In 2014, Deane et al. identified the Top 10 research Priorities for Parkinson’s, asking people what they wanted to see addressed by clinical research. Participants at a research open-day, were shown the survey and rated their priorities differently. We want to update the priorities to align with our participants, collaborating with our colleagues in Germany and Luxembourg with similar Parkinson’s cohorts. <strong>Methods</strong> Participants will include PwP, friends/family, healthcare professionals, researchers/students and members of email lists associated with the three cohorts. All will be invited to complete the same survey. A modified Delphi process will be used whereby in the first round of survey, participants may add a question they feel is not represented by the list of 27 questions (taken from 2014 survey). Participants will be asked to rate each question on how important it is to them on a scale of 1-9. Free text responses will be organised in to themes and the most popular 10 will be added to the list for the Delphi panel and NGTs (1 mixed clinician/patient group, one patient only group) to rate again. Some demographics will be collected to allow for sensitivity analyses on whether confounders change the priorities. <strong>Results</strong> The median and interquartile ranges for each question will be calculated then ordered in ranking of priority.<br> <br> <strong>Conclusion</strong><br> Guidance for future research and results dissemination will be made. A systematic search of current research published, registered or ongoing will be conducted and compared to the most important priorities.