Date: 12/09/2013

A Qualitative Study of Lamellar Ichthyosis

Nearly nine months ago Galderma, a pharmaceutical company exclusively focused on dermatology, approached FIRST to collaborate on a unique project involving online qualitative research with volunteer members affected with lamellar ichthyosis. The volunteers would be required to fulfill a two week commitment of answering survey questions, and participating as members of a virtual community focused on lamellar ichthyosis research. Although an intriguing idea with tremendous potential, it was also new territory for FIRST. Along with that came some uncertainly as to who might participate, what the level of commitment might be for each participant, and the consideration of how this endeavor might be of benefit to the FIRST community.

Today, FIRST is excited to share the news that not only was the enthusiasm and commitment of our participant members entirely overwhelming, with over 20 volunteer participants, but the outcome from a carefully developed selection of questions, produced a unique and comprehensive overview of life for parents and affected individuals with lamellar ichthyosis.

The survey itself was positioned to gain an in-depth understanding of the experience of the condition of lamellar ichthyosis and its impact on patients’ and parents’ lives. Many of the questions focused on how the symptoms of the disease have impacted the quality of their lives, how living with ichthyosis evolves over time, and how and when the disease was first diagnosed. Additionally the survey hoped to gain a clear view of potential treatment patterns based on patient characteristics and patients’ treatment history.

When the two week online community came to a close, it was clear to see that trends within the life experience of the participants had percolated. The initial goals were achieved by Galderma, and they had now gathered the qualitative study they had projected, giving them a more holistic view of living with lamellar ichthyosis. We are happy to share with you the collective results in "Lamellar ichthyosis, a qualitative survey in the US and Europe.”  We thank all who participated and remind you that the willingness to share your experience will make a difference in the lives of so many.

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