GLObal PAediatric Data Forum (GLOPAD)

The GLObal PAediatric Data Forum (GLOPAD) was formed as an action from the workshop ‘Increasing the Harmonization and Standardization of Disease-Specific Paediatric Trial Data’ organized by the c4c team at Newcastle University and held in Rome in May 2022.

GLOPAD Aims

  • To bring together key stakeholders in the domain of disease-related terminology and data interoperability.
  • To raise awareness of the need to avoid siloing data and to optimally use and reuse data from vulnerable populations.

GLOPAD Objectives

  • Avoid duplication in the field.
  • Ensure c4c can address the paediatric-specific aspects of data harmonization by partnering with others.
  • Ensure that the paediatric clinical research community is both using and shaping the best possible tools and resources.
  • Identify collaborative opportunities.
  • Ensure relevant initiatives and projects meet the needs of the paediatric/rare disease population.
  • Create and maintain a log of each initiative, vision and opportunities.
  • Raise awareness of data interoperability and the FAIR principals.
  • Long term objective of service brokerage.

Members

  • The GLOPAD has a global remit and is open to health and research related organizations, initiatives, individuals, projects and industry working with paediatric data in the following fields:
    • Embedding FAIR data principles.
    • Data harmonization/standardization/interoperability.
    • Real world data (and its applicability to clinical trials.
    • Rare/paediatric diseases – including ERNs and patient organizations.

Meetings

  • The GLOPAD meets quarterly on MS Teams.
  • Smaller working groups focus on different areas of expertise, such as developing a paediatric use case to explore access to paediatric clinical trial data and AI.

Contact

To learn more about the GLOPAD or to be added to the mailing list, contact Avril Palmeri at avril.palmeri@newcastle.ac.uk