Partnerships with patients’ organisations
The ILDS is committed to the inclusion of the patient voice in our work and we collaborate with patients’ organisations across a range of areas.
31 August 2021
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) tells us about their GRIDD Project, which aims to measure the disease burden across a wide spectrum of dermatological diseases and by developing and implementing an innovative patient-impact measurement tool: Patient-Reported Impact of Dermatological Diseases (PRIDD).
People living with dermatological conditions face stigma, shame and other psychosocial challenges in addition to the physical symptoms of their diseases. They struggle with access to care and treatment because decision-makers perceive the relative impact of these conditions to be considerably lower than they actually are.
The Global Research on the Impact of Dermatological Diseases (GRIDD) project, led by the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) aims to correct this misperception. It will do this by measuring the disease burden across a wide spectrum of dermatological diseases and by developing and implementing an innovative patient-impact measurement tool: Patient-Reported Impact of Dermatological Diseases (PRIDD).
Working with the University of Hamburg and Cardiff University, this first-ever global patient-initiated ‘impact of skin disease’ research project is expected to have a profound and lasting effect on how policy decisions affecting the care and treatment of dermatology patients are made. It is widely felt that the data collected through this global research will help quantify the overall importance of the specialty of dermatology and stimulate further research.
Currently in Phase 4, the PRIDD measure is being validated by dermatology patients across all regions and in as many dermatology diseases as possible, through cognitive interviews (concluded August 31) and psychometric testing (starting in late-2021 and concluding by in mid-2022).
Why GRIDD Matters to Specialists and Healthcare Providers?
Global rankings of diseases, such as the Disability Adjusted Life Years (DALY) position dermatology relatively low compared to other diseases, thereby inferring that these conditions do not have a significant impact on the quality of life for sufferers. The data produced by GRIDD will play a vitally important role in addressing this low disease ranking as well as the widely acknowledged weaknesses of the Dermatology Life Quality Index (DLQI) which is used widely in clinical trials.
GRIDD is also a response to the World Health Organization’s (WHO) Global Burden of Disease (GBD) initiatives which have also underestimated the toll of living with a dermatological condition. Data from the GBD projects are used to identify patient needs, develop policies, and determine resource-allocation and research priorities on a global scale.
The credible data gathered through GRIDD will provide specialists (dermatologists, researchers, etc.), patients, patient organizations, industry and others with the evidence needed to advocate for better policies, educational resources and training services; secure more research and development funding; and improve access to treatments and to care for patients.
GlobalSkin / ILDS Co-hosted Webinar
ILDS Member organisations are invited to learn more about GRIDD by joining a webinar on 22 September 2021, at 16:30 CEST. During this co-hosted event attendees will learn more about the Global Research on the Impact of Dermatological Diseases (GRIDD) project and specifically how physicians can get their patients involved in the Psychometric Testing of PRIDD later this year.
Help us spread the word about GRIDD!
Healthcare providers can play a pivotal role in the project by sharing information with their patients. Help spread the word about GRIDD to ensure the experiences of patients from your region and your disease specialty are captured in the data collection. Join us on 22 September, to learn how you can help support this ground-breaking research.
Register to attend the webinar here.
Working together, we can empower and validate dermatology patients around the world.
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance committed to improving the lives of dermatology patients worldwide. GlobalSkin nurtures relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 185 patient association members ─ located in over 62 countries representing more than 54 disease areas ─ to reach more patients, and provide them with greater support, education and advocacy. https://globalskin.org