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.
Similar studies
Other trials that look related to this one.
This study interviews people with inherited skin conditions (genodermatoses) who want to have children, and the doctors who care for them. The goal is to learn how to better support family planning decisions, like counseling about genetics and pregnancy risks.
This trial tests an oral drug called erlotinib (an EGFR inhibitor) in adults with certain genetic skin disorders. It aims to reduce symptoms of thickened, blistering or scaly skin. You may be able to join if you have a confirmed genetic form of these conditions and your skin is moderately affected.
This study looks at how young adults aged 15–25 with rare genetic conditions (like certain bone, skin, hearing, or facial conditions) are doing in school, work, and social life. Researchers want to understand what helps or prevents young people with these conditions from being included in their communities.
This is a study that follows people with an immune-related illness at Lille University Hospital to better understand their care needs over time. By collecting information regularly, the study may help improve how future patients are monitored and treated.
This study looks at the immune system in people with recessive dystrophic epidermolysis bullosa (RDEB) and tests how placental stem cells affect immune cells in the lab. It aims to understand the disease better and explore potential treatments.
This study tries to find genetic causes for rare diseases that are not yet understood. It uses a national rare-disease data bank and collects consent from patients and sometimes close family members.
Hear when a new Ichthyosis trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.