PARIS — The Global Research on the Impact of Dermatological Diseases (GRIDD) project is working to change the way the burden of skin disease is measured.
Currently, in the rankings of disease burden, skin disease is near the bottom. "That's because the metrics are unfair," said Matthias Augustin, MD, from the Institute of Health Care Research in Dermatology and Nursing at the University Medical Center in Hamburg–Eppendorf, Germany, who is leading the project.
At the moment, 25% of all treatments provided to patients around the world are for skin diseases, and 1.5 billion people suffer from skin conditions that need treatment, he reported.
The degree to which a specific disease is a burden has an effect on the overall management of the disease, such as the number of dermatologists that will be needed and the treatment patients will require.
Currently, the World Health Organization (WHO) uses disability-adjusted life years to assess disease burden, Augustin said here at the 27th European Academy of Dermatology and Venereology (EADV) Congress.
However, "if you ask 15,000 normal healthy people, you get all the prejudices and misconceptions of the public in the outcomes," Augustin pointed out. "This is why gout has higher disease weight than melanoma or psoriasis."
With the WHO system, melanoma is weighted at 0.05, which is just one-third the weight of gout. "If I asked you whether you'd prefer to have gout or melanoma, I think the answer is clear," he said. And the same holds true for psoriasis, which is also just one-third the weight of gout.
GRIDD "is a global project driven by patients," he explained.
Patients have asked us, as specialists in outcomes research, to collaborate because they want to develop a global database of disease burden related to all skin diseases. "They want to get the hard numbers on burden because burden justifies the spending for healthcare," he said.
To truly capture how the lives of patients and their families are affected by skin disease, patients from clinics around the world are being asked what should be included on a questionnaire that will be developed.
The project, which has three phases, is currently in the first phase: information collection. The second phase is analysis and the third is the development and validation of the questionnaire.
In the next year, when the questionnaire starts to come together, clinicians around the world will likely become aware of the GRIDD project, Augustin told Medscape Medical News.
This is the first project of its kind, said Christine Janus, chief executive officer of globalskin.org, the organization leading the project.
"This is the first completely patient-initiated and patient-driven global research study in dermatology," Janus told Medscape Medical News. 'It's the first project that systematically challenges the global burden of disease by bringing the patient perspective into the measurement, and it's the first comprehensive impact study in the history of dermatology."
Evidence of Dermatologic Diseases
Changing the way the world sees dermatology is the mission. "Unless we provide evidence that dermatologic diseases have an impact, the world will see the practice of dermatology as people with pimples," she explained.
The project leaders have been talking with people from WHO and the Institute for Health Metrics and Evaluation and "they're very excited about this process," she said.
Funding for the project comes from pharmaceutical company grants, but pharma has no input into the research, Janus emphasized.
Eventually, users of the database will be able to access information on disease burden by country and by skin disease. This model could also work for other diseases, she pointed out.
The project team hopes the new measure will be incorporated into large-scale pharmaceutical trials, said Christine Bundy, PhD, from Cardiff University in the United Kingdom, who is a GRIDD research leader.
The presentation featured roundtable discussions among researchers, nurses, physicians, patient advocates, patients, and industry representatives.
EADV President Luca Borradori, MD, said he was moved to speak when he saw the various factions being brought together and collaborating.
"You can't do anything without understanding your patients, which are the reason for your existence," he said. "This is one of the best sessions I have attended in many years of the EADV, and one of the most important.
Augustin and Bundy have disclosed no relevant financial relationships. Janus reports receiving grants from Leo, Celgene, Sanofi Genzym, and Pfizer to fund the initial phase of the project.
27th European Academy of Dermatology and Venereology (EADV) Congress. Presented September 14, 2018.
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Cite this: Global Estimates Belittle Burden of Skin Diseases - Medscape - Sep 15, 2018.