The International Hemoglobinopathy Research Network (INHERENT) was established to explore genetic modifiers in hemoglobinopathies (HBs), including Sickle Cell Disease and β-Thalassemia, through large, multi-ethnic genome-wide association studies (GWAS). INHERENT aims at collecting data and biospecimens from 30,000 individuals with HBs, both pediatric and adult, to study the role of genetic modifiers, advance scientific knowledge and improve treatments.

ROLE OF THE FOUNDATION
The Foundation is chairing the Ethics Working Group, which is currently mapping existing legislation and requirements related to clinical research, personal data protection, biosample management, data/sample sharing, patient consent and assent in participating countries and regions.

It is involved in the development of network-specific guidelines and templates to coordinate and facilitate members in submitting research study applications to the relevant ethics committees/institutional review boards.

FUNDED BY:  Co-financed by both public and private funds

DURATION: From 2020

PARTNERS:

INHERENT is an umbrella network:

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