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.
Disclaimer
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the original study
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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CHU Angers
RECRUITINGAngers, 49033, France
Contact Phone: •••-•••-•••• Email: •••••@•••••