GlobalSkin Launches Groundbreaking GRIDD Study

The GRIDD Study, a novel patient-led research initiative, will measure the true impact of skin diseases globally.

OTTAWA, ONTARIO, CANADA, July 12, 2023/EINPresswire.com/ -- The International Alliance of Dermatology Patient Organizations (GlobalSkin), in partnership with Cardiff University (UK), and University Medical Centre Hamburg-Eppendorf (Germany), recently launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study. This patient-led research partnership generates comprehensive global data on the impact of conditions of the skin, hair, nail, and mucosa on people’s lives.

The GRIDD Study leverages a newly developed tool, the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, designed over a four-year period with input from nearly 2500 patients with skin diseases from around the world, to capture and quantify lived experience. This comes at a time when key agencies in public health, such as the US Food and Drug Administration and European Medicines Agency, have placed a high priority on the generation and use of Patient Experience Data.

GRIDD data will support dermatology community advocacy work calling for greater research investment and more accessible care and treatment, to ultimately improve the lives of dermatology patients. For the first time, patients from around the world and all dermatological disease types will contribute to a dataset that measures the true impact of living with their diseases.

A total of 10,000 adults living with skin diseases are anticipated to take part in the GRIDD Study, which takes 10-20 minutes to complete. It is accessible in 17 languages and open until September 28, 2023. https://globalskin.org/GRIDDStudy.

QUOTES

"The launch of the GRIDD Study, following seven years of extensive research and the tireless support of our patient organization community, marks a significant step forward in our mission to enhance understanding of skin conditions and patients’ unmet needs. I'm deeply grateful to our worldwide network of patient organizations and partners, whose commitment and support have been vital to this project. We are enthusiastic about the potential of the GRIDD Study and look forward to leveraging its insights to help create a better future for people living the stigma, mental health impacts and often-debilitating symptoms of skin conditions worldwide." Jennifer Austin, GlobalSkin Chief Executive Officer

"The GRIDD Study is an opportunity for patients to share their unfiltered views of the day-to-day challenges they face. They are disease experience experts and can help us gather data validating the need for improved care, better treatment options, and more affordable medicines.” Marc Yale, GlobalSkin Board President

“This patient organisation and academic partnership has changed the way I approach research and practice. The rigor of the research plus the invaluable insights and participation from patients and patient organisation leaders has resulted in a new measure of the highest quality which we hope will become the gold standard at capturing the full impact of living with skin conditions. I am indebted to GlobalSkin for initiating and supporting this collaboration. The GRIDD Study is a shining example of how people living with the condition can be at the centre of important research initiatives and make their voices heard.” Christine Bundy PhD, AFBPS, CPsychol, Professor of Behavioural Medicine, Cardiff University - Co-lead Researcher GRIDD project

“The GRIDD project is a milestone in collaborative research between scientists, dermatologists and patients. It is the first global research program initiated and organized by a patient organization in dermatology. For the first time in history, a worldwide survey measuring the burden of skin diseases is conducted. This is particularly important because the negative impact of skin diseases is often greatly underestimated. With this unique project, we expect robust scientific data to achieve a powerful collective voice for greater and equitable access to care for people with skin diseases worldwide. In this sense, the project is a prime example of successful research in the spirit of People Centered Health Care as promoted by WHO.” Prof. Dr. Matthias Augustin, MD, PhD, Professor of Dermatology and Chair of Health Economics, University Medical Center of Hamburg - Co-lead Researcher GRIDD project

BACKGROUND

About GlobalSkin
GlobalSkin (https://globalskin.org) is a not-for-profit organization dedicated to improving the lives of dermatology patients through awareness, advocacy, and research, in collaboration with patient organizations, healthcare professionals, and industry partners. GlobalSkin supports its 230+ patient organization members from 65 countries & 54 disease areas, through resources and support, while also advocating for advancements in dermatology, access to care, and policy changes.

Patient organizations from around the world have identified significant gaps in their ability to advocate for their patients due to a lack of verifiable patient experience data. This is largely because existing Patient-reported outcome measures (PROMs) are rarely theory-informed and do not comprehensively capture the full impact of dermatological diseases on patients’ lives - including stigma, mental health, and barriers to inclusion - and therefore underestimate patient burden.

About GRIDD
Dermatological conditions are highly prevalent worldwide and significantly impact upon quality of life. Most published dermatology-specific PROMs (used across conditions) cannot be recommended for use according to the COSMIN criteria (https://www.cosmin.nl). They do not fully capture the substantial physical, psychological, and social impact dermatological conditions can have on patients’ lives. This is largely because of insufficient patient involvement during PROM development and a reliance on classical psychometric methods. We developed the PRIDD measure in close partnership with patients. PRIDD meets the gold-standard COSMIN criteria, the only dermatology-specific measure to do so.

PRIDD is a valid and reliable tool that can help clinicians provide better care, and stakeholders to understand the global burden of skin diseases. PRIDD will greatly enhance patient perspectives by providing quantifiable patient impact data for better decision-making, with higher prioritisation of dermatological conditions.

Published journal articles on GRIDD:
• Evidence of the content validity, acceptability, and feasibility of a new Patient-Reported Impact of Dermatological Diseases measure - Frontiers in Medicine, May 2023
• Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study - ActaDV, November 2022
• Patient-Reported Outcome Measures in Dermatology: A Systematic Review - Acta Dermato-Venereologic, July 2021

For more information on the GRIDD Study, please visit https://globalskin.org/research or contact:

Visnja Zaborski Breton
GlobalSkin
visnja.zaborski-breton@globalskin.org
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