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Table 2 Recommendations derived from the Clinical & Laboratory Standards Institute [5]. Note that recommendations have been edited for brevity

From: Pain points in parents’ interactions with newborn screening systems: a qualitative study

– In putatively positive cases where follow-up is required, the appropriate primary care clinician should contact parents with accurate and culturally sensitive information, and take steps to coordinate timely specialist care
– For conditions where early onset of severe symptoms are likely, contact with parents should be immediate (and preferably via telephone)
– Communication with parents should be rapid, confidential, and shared with all stakeholders
– Relevant information should be available to all stakeholders, including parents and clinicians at the point of care
– Systems should allow (to the greatest extent possible) linkage or integration with other child health systems
– NBS-related education should be provided to parents in the third trimester of pregnancy
– Information regarding appropriate follow-up should be provided by a clinician who has an established relationship with the parents
– Educational material should be adequately detailed, culturally sensitive, and linguistically appropriate
– After an initial positive result, education should be provided to explain why further testing is necessary, the probability of an initial false positive result, the process & timeframe for confirming results, whether or not intervention is immediately required prior to a confirmatory result, and additional basic information regarding the condition