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The raw data files for "An online pain management program for people with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder: a three-staged development process"

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are painful, chronic and multi-systemic conditions. No online pain management programs for hEDS/HSD currently exist. We aimed to develop one by exploring what people with hEDS/HSD want in such programs.

A Delphi was conducted via Recap and Lime Survey platforms of two stakeholder groups: participants with hEDS/HSD and healthcare professionals (HCP). Two rounds surveys were conducted. Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS). Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and cohort specific program was established.

Funding

Novel Innate Immune Adjuvant for Avian Influenza and West Nile Virus Vaccines

National Institute of Allergy and Infectious Diseases

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History

Research Project ID

Ethics DMP No. 12119 Ethics Project Approval No. 12192

Q/A Log

  • FAIR assessment completed
  • Institutional review completed

FAIR Self Assessment Summary

This text has been generated from a tool that has been adapted from the ARDC FAIR Assessment Tool Findable -------- Does the dataset have any identifiers assigned? Global Is the dataset identifier included in all metadata records/files describing the data? Yes How is the data described with metadata? Comprehensively (see suggestion) using a recognised formal machine-readable metadata schema What type of repository or registry is the metadata record in? Data is in one place but discoverable through several registries Accessible ---------- How accessible is the data? Publicly accessible Is the data available online without requiring specialised protocols or tools once access has been approved? Standard web service API (e.g. OGC) Will the metadata record be available even if the data is no longer available? Yes Interoperable ------------- What (file) format(s) is the data available in? In a structured, open standard, machine-readable format What best describes the types of vocabularies/ontologies/tagging schemas used to define the data elements? Standardised vocabularies/ontologies/schema without global identifiers How is the metadata linked to other data and metadata (to enhance context and clearly indicate relationships)? The metadata record includes URI links to related metadata, data and definitions Reusable -------- Which of the following best describes the license/usage rights attached to the data? Standard machine-readable license (e.g. Creative Commons) How much provenance information has been captured to facilitate data reuse? Partially recorded

FAIR Self Assessment Rating

  • 4 Stars

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  • General

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