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Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_5dbf9efac73d4f5b800502edab140148

Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

About this item

Full title

Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

Publisher

Switzerland: MDPI AG

Journal title

Children (Basel), 2022-11, Vol.9 (12), p.1829

Language

English

Formats

Publication information

Publisher

Switzerland: MDPI AG

More information

Scope and Contents

Contents

The aim of this study was to assess the psychosocial burden in parents of children with spinal muscular atrophy (SMA), detected by newborn screening (NBS), for which first pilot projects started in January 2018 in Germany. The survey, performed 1–2 years after children’s diagnosis of SMA via NBS, included 3 parent-related questionnaires to evaluate...

Alternative Titles

Full title

Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

Identifiers

Primary Identifiers

Record Identifier

TN_cdi_doaj_primary_oai_doaj_org_article_5dbf9efac73d4f5b800502edab140148

Permalink

https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_5dbf9efac73d4f5b800502edab140148

Other Identifiers

ISSN

2227-9067

E-ISSN

2227-9067

DOI

10.3390/children9121829

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