Scientific publications
Prioritization of therapy uncertainties in congenital ichthyosis results from a priority setting partnership
Hernández-Martín A(1), Dávila-Seijo P(2), de Lucas R(3), Baselga E(4), Redondo P(5), Martín-Santiago A(6), Azaña-Defez JM(7), González-Viejo I(8), Jiménez-Ferreres L(9), González-Enseñat MA(10), Arroyo-Manzanal MI(11)(12), Soria JM(12), Garcia-Doval I(13).
Abstract
Ichthyosis patients suffer important impairment of their quality of life not only because of their dermatological condition but also due to pruritus, sweating abnormalities, delayed growth in childhood, recurrent keratitis, hearing disturbances and social relationship issues.
Current evidence about therapy is limited and research priorities of academic researchers, pharmaceutical companies, health care professionals (HCP), patients and their caregivers may focus on different aspects. Detecting the lack of knowledge in rare diseases is particularly important for establishing a research agenda that matches the interest of academic research and patients' needs.
CITATION Br J Dermatol. 2015 May 21. doi: 10.1111/bjd.13914.
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