The work plan is divided into four main working groups (WG) with their main activities described below:
Co-chairs of SCD subgroup: Baba Inusa, Obiageli Nnodu
Co-chairs of thalassaemia subgroup: Zilfalil Bin Alwi, Sara Trompeter
Coordinator: Natasha Archer
Two subgroups will be created within the Clinical WG: one for SCD and one for β-thalassaemia. The primary objectives of this WG will be to:
Develop a standardised questionnaire for the collection of clinical data as part of the genome-wide association study;
- Prioritise clinical and/or biological questions to be studied by INHERENT.
Co-chairs: Siana Nkya, Coralea Stephanou
This WG will:
Develop protocols and procedures for collection and transfer and genotyping of DNA samples
Identify the most suitable SNP chip and coordinate the design of a custom component, if necessary.
Define the core genotyping centers of the network
Data management and analysis WG
Co-chairs: Kyriaki Michailidou, Petros Kountouris
This WG will be responsible for the aspects related to bioinformatics and biostatistics. Specifically its main objectives include:
Establish data collection and storage protocols;
Implement procedures to ensure data security and pseudonymisation;
Set up quality control protocols;
Define and implement imputation and statistical analysis protocols;
Develop an interface for data sharing;
Co-chairs: Fedele Bonifazi, Viviana Giannuzzi
All relevant ethical, legal and social issues will be be addressed in this WG. Specifically, the Ethics WG will responsible for the ethical, legal, and social issues related to the study, including designing the consent form templates.
Analyse the legislation for sample and data collection and transfer across all countries/regions participating in INHERENT
- Design consent form templates for INHERENT and support members through all necessary procedures for obtaining bioethical approval
Define protocols and procedures for data sharing.
Knowledge Translation WG
Chair: Kevin Kuo
Coordinator: Anneliesse Justiniano
This WG will determine how best to translate knowledge gained from INHERENT to improve the health and wellbeing of patients with haemoglobinopathies. Its mission is use the results from INHERENT to make informed decisions about health policies, programmes and proctices in the global and local context.