Welcome to INHERENT

The International Hemoglobinopthy Research Network (INHERENT) was formed in 2020 with the primary aim to study the role of genetic modifiers in hemoglobinopathies through a large, multi-ethnic genome-wide association study (GWAS). The target sample size of INHERENT is at least 30,000 individuals with hemoglobinopathies. Therefore, INHERENT will address the challenges of previous studies related to small sample sizes and low statistical power, while promoting the participation of diverse populations worldwide. 


Participation in INHERENT is open for any group that can submit to the study a minimum of 30 samples with their core phenotypic description.

Please contact Dr Petros Kountouris (This email address is being protected from spambots. You need JavaScript enabled to view it.), if interested to join.


Specifically, INHERENT aims to:

  1. discover new genetic modifiers of hemoglobinopathies,
  2. validate previously reported genetic modifiers,
  3. pool and analyze existing genomic data,
  4. standardize phenotypic descriptions using established standards, aligned with international recommendations,
  5. develop a case report form (CRF) to efficiently gather sufficient high-quality data across countries accounting for different resource capabilities, and
  6. create a research resource of disease-specific data generated in INHERENT, including genomic, phenotypic, and functional data.

INHERENT is an umbrella network that brings together nine existing and successful international/regional networks, as follows: 

  2. Rare Anemia Disorders European Epidemiological Platform (RADeep),
  3. African Research and Innovative Initiative for Sickle Cell Education (ARISE),
  4. Sickle Pan-African Research Consortium (SPARCO),
  5. Sickle Africa Data Coordinating Center (SADaCC),
  6. Réseau d'Etude de la Drépanocytose en Afrique Centrale (REDAC),
  7. Human Variome Project Global Globin Network (HVP GGN),
  8. International Health Repository (IHR),
  9. ClinGen Hemoglobinopathy Variant Curation Expert Panel (Hemoglobinopathy VCEP)

INHERENT founding members




Kountouris P, Stephanou C, Archer N, Bonifazi F, Giannuzzi V, Kuo KHM, Maggio A, Makani J, Mañú-Pereira MDM, Michailidou K, Nkya S, Nnodu OE, Trompeter S, Tshilolo L, Wonkam A, Zilfalil BA, Inusa BPD, Kleanthous M; on behalf of the International Hemoglobinopathy Research Network (INHERENT). The International Hemoglobinopathy Research Network (INHERENT): An international initiative to study the role of genetic modifiers in hemoglobinopathies. Am J Hematol. 2021 Nov 1;96(11):E416-E420. doi: 10.1002/ajh.26323. Epub 2021 Aug 30. PMID: 34406671.


With the endorsement of ERN-EuroBloodNet