Events

A cross-sectional study of the International Pemphigus and Pemphigoid Foundation

April 5, 2021
This past summer and early fall, we asked our patient community to participate in a survey regarding the effects that the ongoing COVID-19 pandemic have had on their lives. We’re happy to report that the results of that survey led to a publication in ​​​the Journal of The European Academy of Dermatology and Venereology this month: “COVID-19 Pandemic and Autoimmune Bullous Diseases: a Cross-Sectional Study of the International Pemphigus and Pemphigoid Foundation”.

We are especially grateful to the 372 pemphigus and pemphigoid patients who completed our USC / IPPF COVID-19 Impact Survey.

The objective of this study as outlined in the article was “to investigate the associations of outdoor activity restriction, income loss and treatment non-adherence with self-reported outcomes and to determine the satisfaction level with teledermatology platforms in patients with autoimmune bullous diseases (AIBDs) during the COVID-19 pandemic.” Access the article, including the study data and conclusions, here. 

Access the Article

The following has been provided by the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin).

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is inviting pemphigus and pemphigoid patient community members to participate in a unique research project where the dermatology patient is the expert and their opinion truly matters.

With the help and guidance of dermatology patients around the world, the Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to develop a global instrument to measure the impact of living with skin diseases on a global scale. Further, it will document patient experiences including the extent of disease impact and burden for patients and their families.

By participating in GRIDD, patients will help design a new and credible measurement tool (questionnaire) that fully explains the impacts and challenges patients experience.

Dermatology patients are needed!

The GRIDD project is currently in Phase 3 and focused on a Patient Data Verification Delphi. The goal of the Delphi is to gather impact data from 2,000 adult dermatology patients representing as many different dermatological diseases as possible and from all regions of the globe.

As a participant, you would be asked to take part in two surveys – one now and then one in two
months. The survey will ask you questions about your experience living with pemphigus and pemphigoid and how it impacts your life and how much of a burden it is on your family.

By taking part in the Delphi and completing the two surveys, you will be making an important contribution to improving the lives of pemphigus and pemphigoid patients and all dermatology patients around the world now and in the future.

Make YOUR IMPACT: Take the DELPHI Survey Now 

For more information about GRIDD or GlobalSkin please visit: globalskin.org/research

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