Skip to main content

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 (P-R)

  1. PAH-related disorder (1 gene)
    Gene Condition
    PAH PAH-related disorder
  2. POMC deficiency (1 gene)
    Gene Condition
    POMC Obesity, adrenal insufficiency, and red hair due to POMC deficiency
  3. PSTPIP1 related inflammatory disease (1 gene)
    Gene Condition
    PSTPIP1 PSTPIP1 associated inflammatory disease
  4. Paget disease of bone (1 gene)
    Gene Condition
    TNFRSF11B Paget disease of bone 5, juvenile-onset
  5. Pancreatic agenesis (1 gene)
    Gene Condition
    PTF1A Pancreatic agenesis 2
  6. Periodic fever syndrome (1 gene)
    Gene Condition
    NLRP3 Cryopyrin associated periodic fever syndrome
  7. Persistent Mullerian duct syndrome (2 genes)
    Gene Condition
    AMH Persistent Mullerian duct syndrome, type I
    AMHR2 Persistent Mullerian duct syndrome, type II
  8. Phosphoenolpyruvate carboxykinase deficiency, cytosolic (1 gene)
    Gene Condition
    PCK1 Phosphoenolpyruvate carboxykinase deficiency, cytosolic
  9. Pigmentary disorder, reticulate, with systemic manifestations, X-linked (1 gene)
    Gene Condition
    POLA1 Pigmentary disorder, reticulate, with systemic manifestations, X-linked
  10. Primary Ciliary Dyskinesia (36 genes)
    Gene Condition
    DNAH5 Primary Ciliary Dyskinesia 3
    CCDC39 Primary Ciliary Dyskinesia 14
    DNAH11 Primary Ciliary Dyskinesia 15
    CCDC40 Primary Ciliary Dyskinesia 7
    DNAI1 Primary Ciliary Dyskinesia 1
    SPAG1 Primary Ciliary Dyskinesia 28
    ODAD2 Ciliary dyskinesia, primary, 23
    CCDC103 Ciliary dyskinesia, primary, 17
    ODAD3 Ciliary dyskinesia, primary, 30
    CCNO primary ciliary dyskinesia 29
    CFAP300 ciliary dyskinesia, primary, 38
    DNAAF3 primary ciliary dyskinesia 2
    DNAI2 primary ciliary dyskinesia 9
    FOXJ1 ciliary dyskinesia, primary, 43
    HYDIN primary ciliary dyskinesia 5
    MCIDAS ciliary dyskinesia, primary, 42
    ODAD1 primary ciliary dyskinesia 20
    ODAD4 primary ciliary dyskinesia 35
    RSPH1 primary ciliary dyskinesia 24
    RSPH3 Ciliary dyskinesia, primary, 32
    RSPH4A primary ciliary dyskinesia 11
    RSPH9 Ciliary dyskinesia, primary, 12
    ZMYND10 primary ciliary dyskinesia 22
    CFAP298 Ciliary dyskinesia, primary, 26
    CCDC65 Ciliary dyskinesia, primary, 27
    DNAAF1 Ciliary dyskinesia, primary, 13
    DNAAF11 Ciliary dyskinesia, primary, 19
    DNAAF2 Ciliary dyskinesia, primary, 10
    DNAAF4 Ciliary dyskinesia, primary, 25
    DNAAF5 Ciliary dyskinesia, primary, 18
    DNAH9 Ciliary dyskinesia, primary, 40
    DRC1 Ciliary dyskinesia, primary, 21
    GAS8 Ciliary dyskinesia, primary, 33
    DNAAF6 Ciliary dyskinesia, primary, 36, X-linked
    DNAL1 Ciliary dyskinesia, primary, 16
    LRRC56 Ciliary dyskinesia, primary, 39
  11. Primary coenzyme Q10 deficiency (10 genes)
    Gene Condition
    COQ4 COQ4 related primary coenzyme Q10 deficiency
    COQ8B COQ8B related primary coenzyme Q10 deficiency with nephrotic syndrome
    COQ2 COQ2 related primary coenzyme Q10 deficiency
    COQ6 COQ6 related primary coenzyme Q10 deficiency
    COQ5 COQ5 related primary coenzyme Q10 deficiency
    COQ7 Coenzyme Q10 deficiency, primary, 8
    COQ8A Coenzyme Q10 deficiency, primary, 4
    COQ9 Coenzyme Q10 deficiency, primary, 5
    PDSS1 Coenzyme Q10 deficiency, primary, 2
    PDSS2 Coenzyme Q10 deficiency, primary, 3
  12. Primary hyperoxaluria type I (1 gene)
    Gene Condition
    AGXT Hyperoxaluria, primary, type 1
  13. Primary hyperoxaluria type II (1 gene)
    Gene Condition
    GRHPR Hyperoxaluria, primary, type II
  14. Primary hyperoxaluria type III (1 gene)
    Gene Condition
    HOGA1 Hyperoxaluria, primary, type III
  15. Primary systemic carnitine deficiency (1 gene)
    Gene Condition
    SLC22A5 Primary systemic carnitine deficiency
  16. Progressive familial intrahepatic cholestasis (6 genes)
    Gene Condition
    ABCB11 Cholestasis, progressive familial intrahepatic 2
    ABCB4 Cholestasis, progressive familial intrahepatic 3
    ATP8B1 Cholestasis, progressive familial intrahepatic 1
    TJP2 Cholestasis, progressive familial intrahepatic 4
    USP53 Cholestasis, progressive familial intrahepatic, 7, with or without hearing loss
    ZFYVE19 Cholestasis, progressive familial intrahepatic, 9
  17. Properdin deficiency (1 gene)
    Gene Condition
    CFP Properdin deficiency, X-linked
  18. Propionic acidaemia (2 genes)
    Gene Condition
    PCCA Propionic acidemia 1
    PCCB Propionic acidemia 2
  19. Proprotein Convertase Deficiency (1 gene)
    Gene Condition
    PCSK1 Endocrinopathy due to proprotein convertase 1/3 deficiency
  20. Pseudohypoaldosteronism (8 genes)
    Gene Condition
    SCNN1A SCNN1A related pseudohypoaldosteronism Type 1A
    SCNN1B SCNN1B related pseudohypoaldosteronism Type 1A
    SCNN1G SCNN1G related pseudohypoaldosteronism Type 1A
    NR3C2 Pseudohypoaldosteronism type I, autosomal dominant
    WNK1 Pseudohypoaldosteronism, type IIC
    KLHL3 Pseudohypoaldosteronism, type IID, autosomal recessive
    KLHL3 Pseudohypoaldosteronism, type IID, autosomal dominant
    CUL3 Pseudohypoaldosteronism, type IIE
  21. Pyridoxamine 5-prime-phosphate oxidase deficiency (1 gene)
    Gene Condition
    PNPO Pyridoxamine 5-phosphate oxidase deficiency
  22. Pyridoxine dependent epilepsy (1 gene)
    Gene Condition
    ALDH7A1 Pyridoxine dependent epilepsy
  23. Pyruvate dehydrogenase E1-alpha deficiency (1 gene)
    Gene Condition
    PDHA1 Pyruvate dehydrogenase E1-alpha deficiency
  24. Pyruvate kinase deficiency (1 gene)
    Gene Condition
    PKLR Pyruvate kinase deficiency
  25. ROSAH syndrome (1 gene)
    Gene Condition
    ALPK1 ROSAH syndrome
  26. RPE65 related Leber congenital amaurosis/early-onset severe retinal dystrophy (1 gene)
    Gene Condition
    RPE65 RPE65 associated Leber congenital amaurosis , early-onset severe retinal dystrophy
  27. Resistance to thyroid hormone alpha (1 gene)
    Gene Condition
    THRA Resistance to thyroid hormone alpha (OMIM: Hypothyroidism, congenital, nongoitrous, 6)
  28. Riboflavin transporter deficiency (2 genes)
    Gene Condition
    SLC52A3 Riboflavin transporter deficiency (Brown-Vialetto-Van Laere syndrome 1)
    SLC52A2 Riboflavin transporter deficiency (Brown-Vialetto-Van Laere syndrome 2)