Study follow-up for rare skin and related genetic conditions
Part of Brain & nervous system, Cancer, Eyes & vision, Genetic & congenital, Hormones & metabolism, Immune system & allergy, Skin clinical trials.
This study (a “cohort”) follows people with certain rare skin conditions over time. It helps doctors better understand these diseases and improve long-term care, and you may be asked to complete surveys.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have a confirmed diagnosis of one of these rare conditions: epidermolysis bullosa, ichthyosis, ectodermal dysplasia, incontinentia pigmenti, neurofibromatosis type 1, albinism, pemphigus, mucous membrane pemphigoid, or palmoplantar keratoderma
- You are being followed (new or ongoing cases) at a FIMARAD reference/competence care center
- You (or your child’s parents) can understand the study surveys; the child should be able to understand them with their parents’ help
- You (and/or your child’s parent) can sign consent to join the study
- Regular follow-up visits with the FIMARAD network sites are possible for you
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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