An online survey on "Genetic Newborn Screening" is currently underway, which may also be of interest to parents and expectant parents with a family history of alpha-1 deficiency. The survey is supported by both the Achse and the Children's Network, and we also support the project.
The well-known newborn screening is a voluntary blood test performed on infants just a few days old to screen for a number of pre-defined diseases. This survey explores the potential expansion of this test through so-called "genomic" testing after birth. This genomic newborn screening (gNBS) could detect significantly more congenital diseases early on, as it would allow for the simultaneous analysis of a large number of genes.
The survey is part of a research project funded by the BMBF (Federal Ministry of Education and Research). NEW_LIVES, which is conducted at the universities of Heidelberg and Mannheim.
The aim of the project is to assess whether a gNBS (growth-friendly baby school) is a viable option for Germany. In the online survey, the project team is interested in the attitudes and wishes of expectant parents and parents with at least one child under 8 years old. The results of the survey will be incorporated into a project statement.
- Target group: Expectant parents or parents with at least one child under 8 years old
- Duration: approx. 30 minutes
- Compensation: 10 euros per person, or couples can receive a total of 25 euros.
Participation via a laptop/PC is recommended, as the questionnaire's display is not optimized for mobile phone use.
