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Newborn screening outcomes of mixed blessing

Newborn screening outcomes of mixed blessing - Newborn screening unexpected outcomes

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
NL-OMON
Registry ID
NL-OMON33650
Enrollment
1750
Registered
2009-09-24
Start date
2010-01-01
Completion date
Unknown
Last updated
2024-07-22

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

false positive newborn screening results of screened inborn errors of metabolism in The Netherlands 2007-2009

Interventions

None listed

Sponsors

TNO Leiden Center for Child Health and Pediatrics
Lead Sponsor

Eligibility

Age
18 Years to 99 Years

Inclusion criteria

Inclusion criteria: False positive newborn screening result 2007-2009 Normal result of the newborn screening 2007-2009

Exclusion criteria

Exclusion criteria: Abnormal result newborn screening otherwise (i.e. iatrogenic, prematurity)

Design outcomes

Primary

MeasureTime frame
1. Change in anxiety level and health perception of their child in parents with false positive outcomes. 2. Views and experience of parents confronted with another disease than screened for.

Secondary

MeasureTime frame
1. Balancing benefits of the outcomes of mixed blessing against uncertainties and worries in terms of welfare, autonomy and knowledge. 2. Implications for screening criteria and informed consent and follow-up procedures.

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)