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Summary
This summary is machine-generated.

The Dutch Brain Research Registry (DBRR) successfully recruits participants for brain studies, facilitating over 65 studies and growing its registrant base. Key challenges include enhancing diversity and reaching specific patient populations for sustainable growth.

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Area of Science:

  • Neuroscience research
  • Clinical trial recruitment
  • Biomedical data management

Background:

  • The Dutch Brain Research Registry (DBRR) is an online platform supporting recruitment and prescreening for brain-related studies.
  • It enrolls individuals aged 18+ with or without brain conditions, aiming for broad population representation.

Purpose of the Study:

  • To provide insights into participant recruitment and enrollment trends for brain research studies.
  • To highlight recent platform developments and growth of the DBRR.
  • To discuss key challenges and successes in managing a large-scale research registry.

Main Methods:

  • Analysis of registrant recruitment data (referral and enrollment rates) from November 2019 to December 2024.
  • Categorization of studies into online, observational, and intervention types.
  • Implementation of targeted campaigns for specific diagnoses and platform developments like a study partner portal and APOE-genotyping for the DBRR Biobank.

Main Results:

  • As of 2017, DBRR had over 39,000 registrants; between Nov 2019-Dec 2024, 65 studies were facilitated with 53,995 referrals and 41,271 enrollments.
  • Online studies showed the highest recruitment effectiveness; healthy volunteers were more readily recruited than specific patient groups.
  • Platform developments included 362 study partner sign-ups and the establishment of the DBRR Biobank with 2,558 registrants having known APOE status.

Conclusions:

  • The DBRR has proven successful in recruiting participants for diverse brain-related studies in the Netherlands.
  • The platform effectively supports a wide range of research, including psychiatric and neurodegenerative conditions.
  • Future efforts should focus on long-term sustainability, improving registrant diversity, and enhancing outreach to specific patient groups.