Global Research on the Impact of Dermatological Diseases (GRIDD)
Mae'r cynnwys hwn ar gael yn Saesneg yn unig.
Global Research on the Impact of Dermatological Diseases (GRIDD) is the first global patient-initiated and patient-led impact research study in dermatology.
The study measures the true impact of skin diseases from the patient perspective. Professor Bundy (School of Healthcare Sciences) and Professor Matthias Augustin (Hamburg University) are involved in this research project.
People living with dermatological conditions face stigma, shame and other psycho-social challenges in addition to the physical symptoms of their disease. They struggle with access to care and treatment because decision-makers perceive the relative impact of these conditions to be considerably lower than most others. One look at the Disability Adjusted Life Years (DALY) rankings of diseases and it is plain to see that dermatological conditions are not deemed to have significant impact on the two billion people living with them globally.
The International Alliance of Dermatology Patient Organizations (IADPO) - also known as GlobalSkin - is a unique global alliance, committed to improving the lives of patients worldwide. IADPO nurture relationships with members, partners and all involved in healthcare - building dialogue with decision-makers around the globe to promote patient-centred healthcare. GlobalSkin's work is founded on three pillars: research, advocacy and support.
Reach
The GRIDD project engages patients, living with various skin conditions, globally (40 countries) as part of this research.
Impact
GRIDD aims to measure global disease burden across a wide spectrum of dermatological diseases by developing and using a new innovative measurement instrument. This instrument is derived through a novel methodology called Global Research of Impact on Patients (GRIP), where the questions themselves have been derived from and co-designed directly with patients living with dermatological diseases. The new generic and disease-specific measure will reflect issues of impact relevant to the patient worldwide. It also aims to capture patient experiences including the extent of disease impact and burden for patients and their families.
The systematic literature review from phase 1 and 2 has identified 59 generic, 23 dermatology-specific, and 149 disease-specific PROs used in dermatology research and practice. The measurement properties of the dermatology- and disease-specific measures will be identified and analysed to ground the development of the new measure. In the meantime, patient groups in more than 40 countries are preparing the first item collection.
GRIDD will provide an extended patient view for better decision making at global and country level and, better positioning of skin disease.
