dc.contributor.author
Logroscino, Giancarlo
dc.contributor.author
Kurth, Tobias
dc.contributor.author
Piccininni, Marco
dc.date.accessioned
2021-07-12T14:45:34Z
dc.date.available
2021-07-12T14:45:34Z
dc.identifier.uri
https://refubium.fu-berlin.de/handle/fub188/31299
dc.identifier.uri
http://dx.doi.org/10.17169/refubium-31035
dc.description.abstract
Rare neurodegenerative diseases are characterized by high heterogeneity and high clinical complexity, as well as low incidence and prevalence, thus making tracking small numbers of incident cases in the general population very challenging. Since it is not possible to use classical cohort studies to estimate the incidence of these rare diseases, we can "reconstruct" a theoretical cohort using case information from a well-defined geographic region collected through a surveillance system. The incidence rate is estimated as the ratio between the number of individuals at risk who were diagnosed with the disease of interest during the study period and the estimated overall amount of time individuals in the reference population spent at risk during the study period. If a series of assumptions are met, the approximate incidence proportion of a closed theoretical cohort without competing events and with the same follow-up duration can be calculated by multiplying the incidence rate with the length of the study time. This rationale relies on the presence of an effective referral system, which links all levels of the healthcare system together in the region, from general practitioners to specialized clinical centers. The reconstructed cohort design is a valid and cost-effective method to collect data on the incidence of rare neurodegenerative diseases and represents the theoretical framework for building up population-based registries.
en
dc.subject
Population-based registry
en
dc.subject
Rare diseases
en
dc.subject
Neurodegenerative diseases
en
dc.subject.ddc
600 Technik, Medizin, angewandte Wissenschaften::610 Medizin und Gesundheit::610 Medizin und Gesundheit
dc.title
The Reconstructed Cohort Design: A Method to Study Rare Neurodegenerative Diseases in Population-Based Settings
dc.type
Wissenschaftlicher Artikel
dcterms.bibliographicCitation.doi
10.1159/000502863
dcterms.bibliographicCitation.journaltitle
Neuroepidemiology
dcterms.bibliographicCitation.number
2
dcterms.bibliographicCitation.originalpublishername
Karger
dcterms.bibliographicCitation.pagestart
114
dcterms.bibliographicCitation.pageend
122
dcterms.bibliographicCitation.volume
54
dcterms.rightsHolder.note
Copyright applies in this work.
dcterms.rightsHolder.url
http://rightsstatements.org/vocab/InC/1.0/
refubium.affiliation
Charité - Universitätsmedizin Berlin
refubium.note.author
Dieser Beitrag ist mit Zustimmung des Rechteinhabers aufgrund einer (DFG geförderten) Allianz- bzw. Nationallizenz frei zugänglich.
de
refubium.note.author
This publication is shared with permission of the rights owner and made freely accessible through a DFG (German Research Foundation) funded license at either an alliance or national level.
en
refubium.resourceType.isindependentpub
no
dcterms.accessRights.openaire
open access
dcterms.bibliographicCitation.pmid
31910416
dcterms.isPartOf.issn
0251-5350
dcterms.isPartOf.eissn
1423-0208