Head and Neck Paraganglioma (HNPGL) Registry: A study protocol for prospective data collection in patients with Head and Neck Paragangliomas.

ABSTRACT:

Introduction

There is a lack of comprehensive and uniform data on head and neck paragangliomas (HNPGLs), and research is challenging due to its rarity and the involvement of multiple medical specialties. To improve current research data collection, we initiated the Head and Neck Paraganglioma Registry (HNPGL Registry). The aim of the HNPGL Registry is to a) collect extensive data on all HNPGL patients through a predefined protocol, b) give insight in the long term outcomes using patient reported outcome measures (PROMs), c) create uniformity in the diagnostic and clinical management of these conditions, and thereby d) help provide content for future (randomized) research.

Methods and analysis

The HNPGL Registry is designed as a prospective longitudinal observational registry

SUBMITTER: de Bresser CJM 

PROVIDER: S-EPMC11271953 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature