Rare Disease Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
- Adults or children who have a confirmed diagnosis of one of these nine rare skin conditions: Inherited epidermolysis bullosa, Ichthyosis, Ectodermal dysplasia, Incontinentia Pigmenti, Neurofibromatosis type 1, Albinism, Pemphigus, Mucous membrane pemphigoid, or Palmoplantar keratoderma.
- People who are currently being seen, or will be seen, at one of the reference or competence centres that are part of the FIMARAD healthcare network.
- People who are able to understand and complete a survey (for children, the survey would need to be understood by their parents or guardians).
- People who have provided signed consent to take part in the RaDiCo-FARD study (for children, a parent or guardian must provide consent).
Who may not be able to join:
- People for whom regular follow-up care within the FIMARAD healthcare network sites is not possible.
- People whose diagnosis has not been officially confirmed according to the specific criteria for their condition.
- People, or in the case of children their parents or guardians, who are not able to understand the survey.
- People, or in the case of children their parents or guardians, who have not provided signed consent to take part in the study.
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Principal Investigator: Christine BODEMER, INSERM UMR 1163
Phone: + 33 1 44 49 46 72
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Individual burden score for each selected rare disease
Can't join this trial?
Data last synced from ClinicalTrials.gov: 28 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.