Survey about therapy uncertainties in congenital ichthyosis, excluding ichthyosis vulgaris

The aim of the study is to identify existing major uncertainties in the treatment of ichthyosis. Although we have a variety of therapeutic choices for ichthyosis, patients and doctors continue asking questions that cannot be answered with strong evidence.

Your participation as a patient or as an expert on ichthyosis is very important, because most of these questions arise after having seen many patients with ichthyosis and probably having had the experience of living with ichthyosis and its therapies.

So, if you want to join this project, simply please provide a list with the therapeutic uncertainties you have as a patient or while attending ichthyosis patients (the more specific, the better). The aim is to produce a list of the questions that would be most important to answer by new research.

Imagine that you are distributing a limited research budget and you want to decide how to spend it. What would be the questions that are likely to help other people? In this first survey we are happy to receive any relevant question. They will be ordered later, so feel free to send any question that you feel it is a good proposal for research in ichthyosis. The more specific those questions are, the easier it would be to put it into practice, so we prefer questions that describe a clear outcome (improve pruritus, decrease desquamation…) and that compare some therapeutic alternatives, but any question that you think is important is welcome. Please, find below some examples:

1.- Which is the best treatment to prevent keratitis?
2.- Is A better than B to improve scaling?
3.- Is it useful to do such thing to improve hypohidrosis?

The survey should be submitted before April 27, 2014. Importantly, the doubts should not be limited to topical treatments for hyperkeratosis, but also include other topics such as eye and ENTcare, non pharmacological measures or preventive measures.

Other participants in these study will be Spanish and worldwide dermatologists who treat four or more patients with ichthyosis, members of the Spanish association of patients (ASIC), as well as other healthcare professionals involved in the care of patients with ichthyosis.

Thank you very much for your participation in this study and we hope we can count on you for the next step in the prioritization process.

If you have any further doubts, please contact estudioictiosis@aedv.es.

Please do not forget clicking “Send” after filling the form.

    Academia Española de Dermatología y Venereología · Asociación Española de Ictiosis

    First data

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    What therapeutic uncertainties about congenital ichthyosis (excluding ichthyosis vulgaris) do I propose as a focus of research?

    You can state up to twenty uncertainties about ichthyosis treatements. Please, include all your proposals and submit (Send).
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    Other information and comments

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    CONFIDENTIALITY AND CONSENT Participation in the study is completely voluntary and anonymous but if you wish, you will be able to provide optional contact data throughout the study, these will remain confidential and will be used only for this purpose. The participant shall have the right to withdraw from the research at any time.