Dystrophic epidermolysis bullosa research is prioritising advanced therapies over patient needs
A letter to the editor of the Journal of the American Academy of Dermatology highlights the gap between the current trends in research surrounding treatment options for dystrophic epidermolysis bullosa (DEB), and the top priorities of patient and clinicians. In a comparison of current and completed clinical trials against the ‘Top-10 prioritized uncertainties’ of patients and clinicians as recorded in an earlier study, the Authors found that just 4 of the top ten priorities for patients an clinicians were covered by current research.
Of the 26 trials addressing one of the top 10 priorities for patients, 8 trials covered the top priority ( ‘Which wound care method obtains better outcomes’), two trials cover the 3rd priority (What is the best pain control strategy’), whilst 16 trials cover the last two priorities concerned with possible tissue engineering and stem cell based therapies.
The concern is that the industry is focusing on high risk treatments that patients are unlikely to benefit from at any point in the next few years. The patient and clinician survey clearly demonstrates a desire for better information on how best to cope with DEB, the long-term effects of current treatment strategies such as surgery, and diagnosis methods.
Its not hard to see why researchers are chasing sophisticated treatment options, as these will likely produce the greatest returns in the future. But in a sector that works so closely with patients, patient groups, and clinicians, at every stage of development, a disparity this large between the direction of research and the needs of patients is alarming.