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pcd research news primary ciliary dyskinesia

Newborn Genomes Programme

Genomics England will be delivering the Generation Study and part of this will include sequencing the genomes of 100,000 newborns in England. This is to look for a specific set of rare genetic conditions that affect babies and can be acted on.

The list of the genes that will be included in this study have been recently decided. We are delighted to announce that 36 genes that are associated with PCD have been included. The list of genes may change but we believe this is an important milestone for the PCD community.

PCD Research believes that diagnosing babies before permanent lung damage has occurred is important.

Transplant publication

The largest series of people with PCD who have undergone lung transplantation, across USA, Europe and Turkey has recently been published.

This is a landmark study due to the size and involvement of a number of countries. The median age at transplant was 33.5 years (range 25–49.5 years). The average amount of time people survived after lung transplant was 5-6 years.

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