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Establishing ranked priorities for future hydrocephalus research.

Noriana E Jakopin1,2, Elliot Myong1,3, Trish Bogucki1

  • 11Hydrocephalus Association, Bethesda, Maryland.

Journal of Neurosurgery
|January 22, 2023
PubMed
Summary

A patient-driven initiative identified the top 20 hydrocephalus research priorities. This ranked list, developed with the healthcare community, will guide future research for better treatments and quality of life for hydrocephalus patients.

Keywords:
hydrocephaluspatient-centeredresearch priorities

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Area of Science:

  • Neuroscience
  • Medical Research
  • Patient Advocacy

Background:

  • Hydrocephalus is a complex neurological condition requiring significant research investment.
  • Patient perspectives are crucial for aligning research with lived experiences and needs.
  • Previous research priorities may not fully reflect the current needs of the hydrocephalus community.

Purpose of the Study:

  • To collaboratively establish a ranked list of top research priorities for hydrocephalus.
  • To integrate patient, healthcare, and scientific community insights into research agenda setting.
  • To identify key areas for future hydrocephalus research funding and investigation.

Main Methods:

  • Utilized the James Lind Alliance (JLA) methodology for priority setting.
  • Conducted two surveys to gather community input and refine research questions.
  • Held a virtual prioritization workshop with facilitators for consensus building.

Main Results:

  • Collected 3703 responses from 890 individuals, generating a long list of 146 potential research priorities.
  • Consolidated and verified 49 research uncertainties into a short list.
  • A final ranked top 20 list of hydrocephalus research priorities was established through consensus.

Conclusions:

  • A comprehensive, ranked list of 20 hydrocephalus research priorities was successfully developed.
  • Key areas identified include noninvasive therapies, treatment burden reduction, improved diagnosis, quality of life, and access to care.
  • This prioritized list will direct future research efforts and encourage community and scientific engagement.