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Clinical trial Recruiting at 1 site Observational Ages 6 and up

Optimizing recruitment and follow-up for people with pseudoxanthoma elasticum

Official title: Impact of Optimized Recruitment and Follow-up of Patients With Pseudoxanthoma Elasticum (PXE) by the PXE Reference Center at the CHU in Angers, France, Thanks to the Implementation of Alternating Pathways, Adapted to Age and Symptomatology, and Including Teleconsultations

Run by University Hospital, Angers · NCT06636344 · Data updated 2026-11-12

This project will try new ways of recruiting and following people with PXE treated at the national reference center to see if care and monitoring improve.

Quick facts

Study typeObservational
Ages6 Years and up
SexAll
Enrollment650 (estimated)
SponsorUniversity Hospital, Angers
Government
Locations1 site (Angers)
StatusRecruiting
StartedFebruary 9, 2026
Main results expectedJanuary 2031
Study endsJanuary 2031
Registry record updatedApril 6, 2026
Trial IDNCT06636344 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Any patient with phenotypic or genotypic PXE who is treated at the Angers CRMR during the study periods is eligible and may be offered inclusion, with patients able to be included in both baseline and post-implementation periods if seen in each.

Probably not a fit

Patients not managed at the Angers reference center or those with advanced irreversible complications are unlikely to benefit directly from changes in local care pathways.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This is a quasi-experimental before/after program conducted at the Angers University Hospital PXE reference center with three consecutive 2-year periods: a baseline period, a transition period for implementing new pathways, and a post-implementation evaluation period. The primary analysis uses aggregated, non-identifying activity data from the reference center to compare pathway performance before and after the changes. Secondary objectives include patient questionnaires to measure the impact of age- and symptom-adapted alternating care pathways on individual outcomes. Participation is offered to patients with phenotypic or genotypic PXE cared for at the center, and inclusions are independent between periods.

Why it matters

Potential benefit: If successful, the new recruitment and follow-up pathways could improve timely monitoring, coordination of care, and patient experience for people with PXE.

How similar studies have gone: Care-pathway optimization has improved follow-up and coordination in other rare-disease networks, but applying an alternating, age- and symptom-adapted pathway specifically to PXE is relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* For the main objective and the first secondary objectives : The population taken into account corresponds to all the support and requests managed by the CRMR over the periods of interest (period A1-2 and period A5-6).
* Inclusion in REMOTE-PXE is offered to any patient with a PXE, defined phenotypically or genotypically (see below), treated at the CRMR during the periods of interest. Note that inclusions are independent between the 2 periods (a patient included during period A1-2 can be included again if he/she is treated during period A5-6). PXE is defined phenotypically:
* by the presence of specific skin lesions (clinically suggestive and showing dermal elastorrhexis on skin biopsy) in patients under 25 years of age
* OR by the combination of specific skin lesions (clinically suggestive and showing dermal elastorrhexis on skin biopsy) and specific ophthalmologic lesions, complicated or not (depending on age: orange peel, angioid streaks, retinal dystrophy) over 25 years of age PXE is defined genotypically, regardless of the patient\'s age, by the identification of two variants in the ABCC6 gene.
* Participation in the qualitative study (semi-directed interviews) will be offered to a sample of patients included in the RIPH during the A5-A6 period among patients who were already followed before the A3-A4 period since the objective is to collect their experiences and perceptions of this reorganization of care. Only patients agreeing to participate in this sub-study and giving their consent for the recording of the interviews will be included.

Exclusion Criteria:

* Person objecting to participating in the research
* Patient under curatorship, guardianship and legal protection

Where it's running

  • CHU Angers
    Angers, France     Recruiting

Study contacts

  • Principal investigator: Ludovic Martin, Professor — University Hospital, Angers
  • Study coordinator: Ludovic Martin, Professor
  • Email: LuMartin@chu-angers.fr
  • Phone: 0241353419

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
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Pseudoxanthoma Elasticum 6University Hospital, Angers 66
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.