Proving the burden of living with a rare disease

The Global Research on Impact of Dermatological Diseases (GRIDD) project is a global initiative focused on demonstrating the impact of skin conditions on patients’ lives. Its purpose is to gather worldwide data on dermatological diseases directly from those affected.

The heart of GRIDD lies in the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a novel tool capable of assessing the full impact of skin conditions on patients’ lives. Developed in collaboration with 2,490 patients from 61 countries, representing 90 conditions, PRIDD follows best practices for new measure development. PRIDD has been developed and validated with input from people living with common, rare and ultra-rare dermatological conditions. In some stages of PRIDD’s development, input received was actually highest from patients living with rare conditions.
PRIDD was created to overcome the limitations of the existing dermatology-specific (i.e. can be used across dermatological conditions) measures. It was developed and validated during a rigorous six-year process with substantial patient input and following the latest guidance in new measure development. Our most recently completed study showed that PRIDD is the only dermatology-specific instrument that can be recommended for use according to the scientific criteria, thus excluding widely used measures like the DLQI and Skindex. This suggests that PRIDD works at least as well as, if not better, across large and small patient populations than the existing measures. We need data from both large and small populations (including rare skin conditions and diseases) in the GRIDD study to formally test this assumption.

The GRIDD Study, which is conducted in partnership with researchers from Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), will be active from June 5 until September 28, 2023. It aims to collect responses from 10,000 dermatology patients, representing a breath of regions and skin conditions. The research consists of two consecutive surveys accessible on a mobile-friendly website, taking approximately 15-20 minutes for patients to complete. The surveys are offered in 17 languages, including Arabic, Bengali, Chinese (simplified), English, French, Dutch, Danish, German, Hindi, Italian, Japanese, Portuguese, Russian, Serbian, Spanish, Swahili, and Vietnamese.

Link to the GRIDD STUDY.  

For more information, on the GRIDD Study,