{
  "abstract": "Background Few people with Parkinson’s disease (PwPD) take part in clinical studies. Study participants are not representative of the PD population. Improving equitable access to studies is a key objective of the National Health Service. Research registries can improve recruitment.Aim To build a sustainable research registry that enables PwPD to express interest in studies and supports efficient, inclusive recruitment.Methods Join Parkinson’s Research@Research+Me (JPR@Research+Me) was built as a PD-specific extension to the successful Research+Me registry. Involvement of stakeholders including PwPD and care partners (CPs) ensured a user friendly design.Results PwPD will provide demographic and PD information on registry enrollment, facilitating targeted invitations to participate in studies, and dissemination of study-specific registration of interest surveys to support pre-screening. Potential participants will be matched with and made visible to accessible research sites via postcode tagging and patient preference. Demographic data will support inclusivity monitoring and refinement of recruitment strategies. Automated messaging, co-developed with PwPD and CPs, will keep registrants informed.Conclusion We have produced an online research registry for PwPD which will facilitate inclusive and rapid recruitment to PD trials. The registry will launch in early 2025 and support recruitment to the EJS ACT-PD trial.camille.carroll@newcastle.ac.uk",
  "authors": [
    {
      "affiliations": [
        "Newcastle University"
      ],
      "name": "Zeissler Marie-Louise"
    },
    {
      "affiliations": [
        "University of Plymouth"
      ],
      "name": "Petty Rebecca"
    },
    {
      "affiliations": [
        "Newcastle upon Tyne Hospitals NHS Foundation Trust"
      ],
      "name": "Davidson Rory"
    },
    {
      "affiliations": [
        "Expert through Experience"
      ],
      "name": "Hockey Kate"
    },
    {
      "affiliations": [
        "Newcastle upon Tyne Hospitals NHS Foundation Trust"
      ],
      "name": "Liddle Trevor"
    },
    {
      "affiliations": [
        "University College London"
      ],
      "name": "Mills Georgia"
    },
    {
      "affiliations": [
        "University College London"
      ],
      "name": "Foltynie Tom"
    },
    {
      "affiliations": [
        "County Durham and Darlington NHS Foundation Trust"
      ],
      "name": "Yiannakou Yan"
    },
    {
      "affiliations": [
        "Newcastle University"
      ],
      "name": "Carroll Camille"
    }
  ],
  "title": "212 JPR@Research+Me: the build and launch of a new parkinson’s disease research register",
  "uid": "27aa8c29-7ba0-5939-a80d-18e812987d1e"
}