Protocol on establishing a national disease registry-Swiss Pediatric Inflammatory Brain Disease Registry.

Hulliger, Lorena Freya; Tscherter, Anne; Kuehni, Claudia Elisabeth; Bigi, Sandra (2024). Protocol on establishing a national disease registry-Swiss Pediatric Inflammatory Brain Disease Registry. PLoS ONE, 19(4), e0290908. Public Library of Science 10.1371/journal.pone.0290908

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BACKGROUND

Pediatric-onset inflammatory brain diseases are a group of potentially life-threatening central nervous system disorders. Overall, pediatric-onset inflammatory brain diseases are rare and therefore difficult to study. Patient registries are well suited to study the natural history of (rare) diseases and have markedly advanced the knowledge on pediatric-onset inflammatory brain diseases in other countries. Following their example, we established a national pediatric-onset inflammatory brain disease registry in Switzerland (Swiss-Ped-IBrainD).

AIMS

The Registry aims to describe epidemiology, demographics, diagnostics, management, and treatment, since these areas remain understudied in Switzerland. Additionally, we want to promote research by fostering the knowledge exchange between study centers and setting up studies such as national quality of life surveys. We further aim to facilitate the access to national and international studies for patients with a pediatric-onset inflammatory brain disease living and/or treated in Switzerland.

METHODS

The Swiss-Ped-IBrainD is a multicentric, population-based, observational cohort study (IRB number: 2019-00377) collaborating with 11 neuropediatric centers in Switzerland. Patient screening, information and recruitment is mainly conducted by the local principal investigators. The data collection is organized centrally by the Executive Office of the registry. The collected data is purely observational. Medical records are the primary data source. All patients who have been diagnosed with a pediatric-onset inflammatory brain disease since 2005 are eligible. We aim to include all pediatric-onset inflammatory brain disease patients living and/or treated in Switzerland who meet the inclusion criteria. Considering existing literature and our single-center experience we anticipate 300-400 eligible patients.

STATUS

Currently, all 11 neuropediatric centers have been initiated and are recruiting. As of the first of May 2023, we have identified 275 eligible participants and obtained informed consent from 101 patients and/or families. None of the informed patients and/or families have refused participation.

Item Type:

Journal Article (Further Contribution)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

UniBE Contributor:

Hulliger, Lorena Freya, Tscherter, Anne, Kühni, Claudia, Bigi, Sandra

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

1932-6203

Publisher:

Public Library of Science

Language:

English

Submitter:

Pubmed Import

Date Deposited:

17 Apr 2024 10:52

Last Modified:

02 May 2024 14:16

Publisher DOI:

10.1371/journal.pone.0290908

PubMed ID:

38626083

BORIS DOI:

10.48350/196016

URI:

https://boris.unibe.ch/id/eprint/196016

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