GRIDD Project Phases & Outcomes

2017-2018

MAIN OUTCOMES

Systematic Literature Review - Completed

• Engaged with leading academic institutions and their experts to co-lead the GRIDD project.

• Conducted a systematic literature review of 12,957 existing patient-centered outcome measures used in dermatology using databases including PubMed; Embase; PsychInfo; Cinhal. Findings from this systematic literature review revealed that existing measures used both in research and clinical settings don’t meet the scientific standards.

• 59 generic, 23 dermatology-specific and 149 disease-specific patient-reported outcomes (PROs) used in dermatology research and practice were identified. None met COSMIN Standard A

• Initiated a patient-centred item (impact) identification inventory

• Publish results (Journal article published in Acta Dermato-Venereologica) and results presented at international conferences

The results from GRIDD Phase 1 Systematic Literature Review (2017-2018) found that existing patient-impact measurement tools (questionnaires) used in both dermatology research and clinical settings don’t meet the commonly accepted scientific standards. This means there is currently no COSMIN A Standard for dermatology.GRIDD will address this gap with PRIDD: the A Standard patient-impact measurement tool that will provide the data for many applications including elevating dermatology in the global disease rankings;
allowing the integration of the patient’s voice in dermatology care and treatments and ultimately provide those with dermatology conditions worldwide a better quality of life.

2019-2020

MAIN OUTCOMES

Qualitative Data Collection - Completed

• Formed a GRIDD expert Scientific Advisory Board 

• Developed the new GRIP methodology and conducted patient impact interviews (68) to gather patients’ items (disease impacts).

• Conducted cognitive interviews with a small sample of patients (28) from the global community and multiple diseases to validate the items identified, as well as the accuracy of their description of the item statements.
  

• Analyze data and begin planning for Phase 3 -  Patient Data Verification Delphi

2020-2021

MAIN OUTCOMES

Quantitative Data Collection - Completed

• Conduct the GRIDD Delphi study by distributing a survey to 1200 participants on all continents and include as many different dermatology diseases as possible

•  Finalize the items and their statements

• Begin development of the PRIDD measurement tool with the final list of items/statements

•  Publish results

2021-2022

MAIN OUTCOMES

Testing and Finalizing PRIDD

• Draft the PRIDD measurement tool and perform cognitive and standard psychometric testing to validate items and their statements (i.e patient accuracy, data gaps, etc.)

• Pilot-test PRIDD with patients and leverage patient insights to make refinements

• Conduct scale development and invite peer review via publications and network of patient organizations

•  Publish results

2022 - 2023 

MAIN OUTCOMES

Translate, Cultural Adaptation and Launch of GRIDD Study using PRIDD

• Translate PRIDD into 17 different languages

• Launch PRIDD - patient impact measurement tool in global GRIDD Study to collect patient impact data (June 2023) 

• Report scale development and peer review processes. 

• Poster sessions and paper(s) published on GRIDD research

2023+ 

MAIN OUTCOMES

Data Analysis and Application

• Collect global impact data

• Analyze & share GRIDD data.

• Deliver coordinated global communications/advocacy campaigns at local, regional, and international levels

• Educate/train patient organization leaders and others on how to best leverage PRIDD data

• Produce and catalyze more publications and research

• Lobby to change DALY ranking which influences global health policy at the WHO

• Promote PRIDD as the global dermatology patient-impact databank