New care pathways could improve life for rare disease patients
NCT ID NCT06636344
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study looks at whether offering personalized follow-up, including video visits, helps more people with pseudoxanthoma elasticum (PXE) get proper care. PXE causes calcium buildup in skin, eyes, and blood vessels, leading to vision loss and other problems. The researchers will track 650 patients over several years to see if the new approach increases the number of people who stay in regular care.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- Active substance
- Alternating care pathways (in-person and teleconsultations) plus questionnaires
- What this could lead to
- If successful, this could show that personalized follow-up with telemedicine improves patient satisfaction and care coordination for people with PXE.
- What could go wrong
- This is an observational study without a control group, so it cannot prove cause and effect. Results may not apply to other centers or countries.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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CHU Angers
RECRUITINGAngers, 49033, France
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