Design and Development of a Web-Based Prospective Nationwide Registry for Ocular Inflammatory Diseases: UVEITE.PT – The Portuguese Ocular Inflammation Registry

ABSTRACT

Uveitis is a heterogeneous collection of infrequent diseases, which poses significant challenges to cost-effective research in the field. Medical registries are being increasingly recognized as crucial tools to provide high-quality data, thus enabling prospective clinical research. This paper describes the design and technical structure development of an innovative countrywide electronic medical record for uveitis, Uveite.pt, and gives an overview of the cohort registered since its foundation, March 2020.

Uveite.pt is an electronic medical record platform developed by the Portuguese Ocular Inflammation Group (POIG), a scientific committee of the Portuguese Ophthalmology Society. This is a nationwide customized web-based platform for uveitis patients useful for both clinical practice and real-world-based research, working as a central repository and reporting tool for uveitis. This paper describes the technical principles, the design and the development of a web-based interoperable registry for uveitis in Portugal and provides an overview of more than 400 patients registered in the first 18 months since inception.

In infrequent diseases, the existence of registries enables to gather evidence and increase research possibilities to clinicians. The adoption of this platform enables standardization and improvement of clinical practice in uveitis. It is useful to apprehend the repercussion of medical and surgical treatments in uveitis and scleritis, supporting clinicians in the strict monitoring of drug adverse reactions and surgical outcomes.

KEYWORDS:

• Big data
• epidemiology
• healthcare register
• medical software
• uveitis

Acknowledgments

The authors would like to express their gratitude to the Portuguese Society of Rheumatology (Sociedade Portuguesa de Reumatologia) for the unrestricted and crucial technical and scientific support, that enabled the development and maintenance of this registry.

Author contributions

IL conceptualised, designed and drafted the manuscript. CF, LF, and VN conceptualised and substantively revised the manuscript. JEF and MJS gave crucial scientific and technical support in the platform inception. All authors except JEF and MJS have implemented the platform in their clinical practice. All authors substantively revised the manuscript. All authors have read and approved the submitted version and have agreed on both to be personally accountable for the author’s contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature. All authors read and approved the final manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethics approval and consent to participate

Formal review and approval were obtained from the Portuguese Data Protection Authority (Comissão Nacional de Proteção de Dados—CNPD), Human Research Ethics Committee (HREC) of all IRB from the centres. Additionally, each participating core health care provider needs to obtain approval from the respective Ethics Committee.

Data availability statement

Although datasets are not available in a URL, the datasets used and analysed during the current study are available from the corresponding author upon reasonable request.

Additional information

Funding

Uveite.pt registry receives annual funding (specific funding for its development and implementation, namely for IT support, data management activities, design and layout) from industry stakeholders (Allergan and Alimera) and a grant from the Portuguese Society of Ophthalmology. This is used for data management activities, IT support, layout improvements and legal support. None of those above companies had any interference in the design or development of the registry, nor has any type of proprietary interest in the generated data. Neither entity had, has or will have any interference on the collection, analysis, and interpretation of data, nor have any proprietary interest in the generated data;Sociedade Portuguesa de Oftalmologia (Portuguese Society of Ophthalmology);