GRIDD Phase 4

- SURVEY NOW CLOSED -

You are invited to take part in the GRIDD research study! Have your voice heard!


The Global Research on the Impact of Dermatological Diseases (GRIDD) project has entered Phase 4 – Psychometric Testing where patients around the world will test the Pilot version of the Patient Reported Impact of Dermatological Diseases (PRIDD) measure.

In November - December 2021, we are looking to engage 500 dermatology patients globally, across a broad range of dermatology diseases and regions to test the new measure. This testing will be done through a brief 26-question survey online. The survey is available in English will take 10 minutes of your time! 

WHY?   

Participants who take the survey will be helping to measure, validate and confirm the very real and difficult challenges faced by dermatology patients.

The data we collect will empower our community with disease impact evidence that will help us advocate for improved care, better treatment options, and more affordable medicines.   

Watch the Patient Testimonial Video to learn Why GRIDD Matters! 

Testing and Finalizing PRIDD


1. Cognitive Interviews - Complete 

Cognitive interviews with approx. 30 patients to test the comprehensibility, relevance, comprehensiveness, acceptability, and feasibility of PRIDD: Use data gathered from patients to test how PRIDD performs as a statistical tool and make refinements accordingly.

What this means: July/August 2021: Several patient organizations will be asked to help us find 30 patients to participate in Cognitive Testing interviews. 

2.  Psychometric Testing - In Progress

a. Statistical refinements:  Researchers will use use data gathered from patients to test how PRIDD performs as a statistical tool and make refinements accordingly.  

What this means: November - December 2021:  Dermatology Patient Organizations will be asked to encourage their patients to participate in a Psychometric Testing survey

b. Testing of measurement properties: Establish PRIDD’s quality through its measurement properties and understand what scores mean.   

What this means: Early-2022:  Dermatology Patient Organizations will be asked to encourage their patients to participate in Psychometric Testing surveys – test/re-test. 

 

Benefits to your patient organization

  • Increased credibility through evidence-based advocacy 
  • Outreach opportunities through multiple contact points with members/patients 
  • Media relations using facts to tie to your patient stories 
  • Boost your fundraising with: companies, patients, and families 
  • You and your patients will be a key part of the Global Skin Movement 

To learn more, please watch the GRIDD presentation on our YouTube Channel. GlobalSkin  hosted a webinar to help explain the psychometric testing in more detail - watch the recording here. 

Together, we will strengthen the voice of patients through data! 

Phase 3 Delphi - Explained 

In late 2020 and 2021, the Global Research on the Impact of Dermatological Diseases (GRIDD) team actively engaged patients around the world in a Delphi process, a key step in developing the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Thank you to our patient organizations around the world for their help in making the GRIDD Delphi process a success!  

A Delphi is a consensus-seeking method widely used in health research. The main purpose of a Delphi is to explore a topic in a way that goes beyond what is currently known or believed and is based on the assumption that expert group judgments are more valid or accurate than individual judgments or assumptions. It is a scientific process that promotes greater accuracy and validates previous data-derived assumptions. 

GRIDD Delphi surveyThe GRIDD Delphi was comprised of two consecutive surveys, targeted at adults (over 18 yrs.) diagnosed with a dermatological condition.  The surveys were available in multiple languages: English, French, Spanish, German, Mandarin (simplified Chinese), and Arabic.  

On June 3, the GRIDD Delphi concluded. In Delphi #1, which took place December-January, 1154 patients from 61 countries, representing 90 diseases completed 263 questions about the impact of their dermatological diseases. In Delphi #2, which took place May-June, 493 of the original respondents completed the significantly refined and reduced 76-question questionnaire.  

Results of the Delphi, along with previous GRIDD research, identified multiple important ways that dermatological conditions affect patients’ lives. We want to understand how important each of these impacts are to patients’ quality of life.

This information is essential information for the development of PRIDD. This new measurement tool will allow us to collect data that shows what it is really like to live with a dermatological condition, thus helping dermatology patient organizations advocate for better access to treatments and appropriate healthcare for patients globally.   

Item reduction is now complete (~33 items down from 76 items in Delphi 2 and 263 items in Delphi 1) and the pilot version of PRIDD is in currently undergoing review and approvals.