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The Generation Study will be testing babies for changes in genes linked to more than 200 rare genetic conditions.

These all meet a set of four principles that have guided our approach to choosing conditions. Find out more about our process.

As we learn more from the study and respond to emerging evidence and research, the list of conditions and gene changes we test for may change. Babies in the Generation Study will be tested for the conditions listed at the time they joined the study and will not be re-analysed if this list changes.

This list includes more than 200 individual conditions caused by genetic changes in around 500 different genes. The latest full list of conditions is provided in alphabetical order below.

Current list publication date: February 2025

Since early 2024, we have been reaching out to specialty clinical groups and patient organisations to consider any conditions that may require review or that have not been previously considered for inclusion in the study. These would need to meet our study’s four principles and follow the same approval process.

If you have any questions about the conditions tested in the study or wish to view previous versions of the list, please contact us via our Service Desk.

Conditions (J-L)

  1. Kenny-Caffey syndrome, type 2 (1 gene)
    Gene Condition
    FAM111A Kenny-Caffey syndrome, type 2
  2. LIG4 Syndrome (1 gene)
    Gene Condition
    LIG4 LIG4 Syndrome
  3. Leptin deficiency (1 gene)
    Gene Condition
    LEP Leptin deficiency
  4. Leptin receptor deficiency (1 gene)
    Gene Condition
    LEPR Leptin receptor deficiency
  5. Leukocyte adhesion deficiency (2 genes)
    Gene Condition
    FERMT3 Leukocyte adhesion deficiency, type III
    ITGB2 Leukocyte adhesion deficiency, type I
  6. Lipid storage myopathy due to flavin adenine dinucleotide synthetase deficiency (1 gene)
    Gene Condition
    FLAD1 Lipid storage myopathy due to flavin adenine dinucleotide synthetase deficiency
  7. Lipoid adrenal hyperplasia (1 gene)
    Gene Condition
    STAR STAR deficiency (congenital lipoid hyperplasia)
  8. Long Chain Hydroxyacyl CoA Dehydrogenase Deficiency, LCHAD (1 gene)
    Gene Condition
    HADHA LCHAD deficiency
  9. Lysinuric protein intolerance (1 gene)
    Gene Condition
    SLC7A7 Lysinuric protein intolerance
  10. Lysosomal acid lipase deficiency (1 gene)
    Gene Condition
    LIPA Lysosomal acid lipase deficiency