A paediatrician at Mayo Clinic has set up a new initiative called BabyFORce to push for faster genetic testing for seriously ill newborns, after one family waited five weeks for answers about their child.
The account behind this post is Mayo Clinic, the US-based medical centre. The tweet describes how a five-week wait for a diagnosis — experienced by the family of a child named Oliver Bates — prompted Whitney Thompson, a doctor at Mayo Clinic, to champion rapid whole-genome sequencing (a type of genetic test that reads a patient’s complete DNA in one go) for critically ill babies.
Thompson went on to found BabyFORce, a programme aimed at advancing personalised treatments for children with rare diseases. According to the post, the initiative grew directly from that family’s experience.
Five weeks is a long time when a newborn is seriously ill.
Rapid whole-genome sequencing can, according to research published in medical literature, much shorten the time it takes to identify rare genetic conditions in newborns — allowing clinical teams to tailor treatment rather than working through a process of elimination. Mayo Clinic has not, in this post, provided outcome data for the BabyFORce programme specifically.
The tweet does not include detail about how families outside the US might access the programme, and no Kent NHS trust or UK health body is mentioned in the post. Families in Kent whose children are being investigated for a suspected rare disease can contact their GP or paediatric specialist team, or call NHS 111 for guidance on next steps.
—
*This article reports the content of a post published by @MayoClinic on X. Mayo Clinic is a US institution; the services described are not available through the NHS. For concerns about a child’s health, contact your GP or call NHS 111.*
Source: @MayoClinic
Mayo Clinic Doctor Launches Programme to Speed Diagnosis for Babies with Rare Diseases Quiz
5 questions