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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 (D-F)

  1. DOCK8 Deficiency (1 gene)
    Gene Condition
    DOCK8 DOCK8 Deficiency
  2. Diabetes Insipidus (4 genes)
    Gene Condition
    AVPR2 Diabetes insipidus, nephrogenic, 1
    AQP2 Recessive diabetes insipidus, nephrogenic, 2
    AQP2 Dominant diabetes insipidus, nephrogenic, 2
    AVP Diabetes insipidus, neurohypophyseal
  3. Diamond Blackfan Anaemia (12 genes)
    Gene Condition
    RPS19 Diamond blackfan anaemia 1
    RPL5 Diamond blackfan anaemia 6
    RPL11 Diamond-Blackfan anaemia 7
    RPS26 Diamond-Blackfan anaemia 10
    RPL35A Diamond-Blackfan anaemia 5
    RPS10 Diamond-Blackfan anaemia 9
    RPS17 Diamond-Blackfan anaemia 4
    RPS24 Diamond-blackfan anaemia 3
    RPL15 Diamond-Blackfan anaemia 12
    RPS7 Diamond-Blackfan anaemia 8
    RPL26 Diamond-Blackfan anaemia 11
    RPS29 Diamond-Blackfan anaemia 13
  4. Distal renal tubular acidosis (4 genes)
    Gene Condition
    ATP6V0A4 Distal renal tubular acidosis type 3 with or without sensorineural hearing loss
    ATP6V1B1 Distal renal tubular acidosis type 2 with progressive sensorineural hearing loss
    SLC4A1 Distal renal tubular acidosis type 1, autosomal dominant
    SLC4A1 Distal renal tubular acidosis type 4 with hemolytic anaemia, autosomal recessive
  5. Dopa responsive dystonia (1 gene)
    Gene Condition
    TH Dopa-responsive dystonia due to tyrosine hydroxylase deficiency
  6. Early onset osteoporosis (1 gene)
    Gene Condition
    PLS3 Bone mineral density QTL18, osteoporosis
  7. Ectodermal dysplasia and immunodeficiency 2 (1 gene)
    Gene Condition
    NFKBIA Ectodermal dysplasia and immunodeficiency 2
  8. Erythropoietic protoporphyria (2 genes)
    Gene Condition
    FECH Protoporphyria, erythropoietic, 1
    ALAS2 Protoporphyria, erythropoietic, X-linked
  9. Factor V deficiency (1 gene)
    Gene Condition
    F5 Factor V deficiency
  10. Factor VII deficiency (1 gene)
    Gene Condition
    F7 Factor VII deficiency
  11. Factor X deficiency (1 gene)
    Gene Condition
    F10 Factor X deficiency
  12. Factor XIII Deficiency (2 genes)
    Gene Condition
    F13A1 Factor XIIIA deficiency
    F13B Factor XIIIB deficiency
  13. Familial Chylomicronaemia Syndrome (5 genes)
    Gene Condition
    GPIHBP1 Hyperlipoproteinemia, type 1D
    APOC2 Hyperlipoproteinemia, type Ib
    LMF1 Lipase deficiency, combined
    LPL Lipoprotein lipase deficiency
    APOA5 apolipoprotein A-V deficiency
  14. Familial Haemophagocytic lymphohistiocytosis (4 genes)
    Gene Condition
    PRF1 Haemophagocytic lymphohistiocytosis, familial, 2
    UNC13D Haemophagocytic lymphohistiocytosis, familial, 3
    STX11 Haemophagocytic lymphohistiocytosis, familial, 4
    STXBP2 Familial haemophagocytic lymphohistiocytosis-5
  15. Familial hyperphosphataemic tumoral calcinosis (2 genes)
    Gene Condition
    GALNT3 Tumoral calcinosis, hyperphosphatemic, familial, 1
    FGF23 Tumoral calcinosis, hyperphosphatemic, familial, 2
  16. Familial isolated hypoparathyroidism (2 genes)
    Gene Condition
    GCM2 familial isolated hypoparathyroidism 2, Autosomal Recessive
    PTH familial isolated hypoparathyroidism 1, autosomal recessive
  17. Familial thrombotic thrombocytopenic purpura (1 gene)
    Gene Condition
    ADAMTS13 Familial thrombotic thrombocytopenic purpura
  18. Fructose-1,6-bisphosphatase deficiency (1 gene)
    Gene Condition
    FBP1 Fructose-1,6-bisphosphatase deficiency