For the natural history study PRO-PXE (Progression Rate of Pseudoxanthoma Elasticum-associated Choroidal and Retinal Degeneration), the Eye Clinic of the University Hospital Basel is currently recruiting volunteers with PXE.

Links: German version; French version; Italian version

Purpose of the study

This study aims to systematically compare new visual function tests and new ophthalmic imaging techniques to monitor the natural history of pseudoxanthoma elasticum (PXE).

Currently, several drugs are evaluated in trials for treating PXE. These trials often monitor patients using computed tomography (CT) imaging of the arteries. However, ophthalmic examination methods that allow direct functional testing and imaging of nerve tissue may be better suited to document early disease progression. Whether this is indeed the case will now be investigated.

Participation requirements

Inclusion criteria:

• Diagnosis of Pseudoxanthoma elasticum (PXE)
• Age of 18 years or older

Exclusion criteria:

• Fear of confined spaces (claustrophobia, exclusion criterion due to dark-adapted testing)

Scope

Total duration: 24 months

The study includes a baseline visit (month 0), a month 2 (retest) visit, a month 12 visit, and a month 24 visit.

Each visit takes about 4 to 5 hours (with small breaks).

Risks

No health risks are to be expected.

Benefits

With the help of the collected data, it may be possible to examine possible treatment effects of upcoming therapeutics more precisely. Therefore, PXE patients are expected to benefit from the collected data in the future.

The study includes a comprehensive battery of ophthalmologic examinations. Under certain circumstances, lesions requiring therapy might be detected early.

However, it is possible that you will not derive any personal benefit from participating in the study.

Contact

Please contact us by e-mail.

Kristina Pfau, MD (née Hess)
Kristina.Pfau@usb.ch
Tel. +41 79 357 36 93
University Hospital Basel, Eye Clinic, Mittlere Strasse 91, CH-4031 Basel

Priv.-Doz. Maximilian Pfau, MD
Maximilian.Pfau@usb.ch
Tel. +41 79 525 92 47
University Hospital Basel, Eye Clinic, Mittlere Strasse 91, CH-4031 Basel

Data protection

Please note that your data will be registered when a telephone or written contact is established. If you are not interested in participating in a study, your data will be deleted immediately.