Evaluation of follow-up care for patients with pheochromocytoma and paraganglioma

Is this trial a fit for you?

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

What this trial studies

This multicenter prospective cohort study aims to improve the management and follow-up of patients with pheochromocytomas and paragangliomas (PPGLs) by comparing two follow-up approaches: standard care versus a proactive special care follow-up. Patients will be randomized into either group, with the special care group receiving active reminders and rescheduling for their follow-up appointments. The study seeks to determine if structured follow-up can lead to better long-term outcomes, including reduced morbidity and mortality associated with these tumors. By establishing effective follow-up practices, the research aims to enhance the quality of life for patients at risk of PPGLs.

Why it matters

Who can join: the full rules

Inclusion Criteria:

male and female patients (≥ 5 years of age), who fulfill one or more of the following criteria: (i) Patients with a newly diagnosed PPGL. (ii) Patients with a previous history of PPGLs. (iii) Carrier of genetic mutations known to predispose for the development of PPGLs.

All subjects must have read, understood and signed the informed consent form, before inclusion into the study protocol. Signed parental consent must be obtained for children with suspected PPGLs who are enrolled in the study.

Exclusion Criteria:

* Patients with impaired mental capacity that precludes informed consent.
* Pregnancy does not constitute criteria for exclusion from the protocol. However, in pregnant women no Clonidine testing, no PET scanning, MIBG scanning or contrast CT will be performed.
* Patients at risk from injury from the MRI magnet due to implantable metal or who suffer from anxiety in enclosed spaces are excluded from MRI.

Where it's running

• University Hospital Zurich
  Zurich, Switzerland Recruiting

Study contacts

• Principal investigator: Felix Beuschlein, M.D. — University of Zurich
• Study coordinator: Felix Beuschlein, M.D.
• Email: felix.beuschlein@usz.ch
• Phone: +41 44 255 36 25

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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.