Pseudoxanthoma elasticum: a cohort study and design of a registry.

Pseudoxanthoma elasticum: a cohort study and design of a registry. - Pseudoxanthoma elasticum: the registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON52835

Enrollment

1000

Registered

2018-09-27

Start date

2019-03-12

Completion date

Unknown

Last updated

2026-03-16

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Pseudoxanthoma elasticum PXE Pseudoxanthoma elasticum, PXE

Interventions

None

Eligibility

Age

18 Years to 99 Years

Inclusion criteria

Inclusion criteria: Suspected PXE patient, carrier of PXE variants, or diagnosed PXE patientGiven Informed consentAge: 18 years or older

Exclusion criteria

Exclusion criteria: Age under 18

Design outcomes

Primary

Measure	Time frame
Data will be collected for future research for which the purpose is not known at this time.	—

Secondary

Measure	Time frame
Plasma PPi, ENPP1 activity, anti-retinal antibodies and cytokines will be measured in patients included in the PXE registry, progression of retinal calcification will be measured using late phase ICG angiogram. Health-related quality of life and vision-related quality of life, medical consumption and productivity losses will be measured.	—

Countries

Netherlands

Contacts

Public ContactW Spiering

Universitair Medisch Centrum Utrecht

pxe@umcutrecht.nl+31887559954

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP) · Data processed: Mar 20, 2026