Looks for genes that affect sickle cell disease and thalassemia
Studies genetic differences in people with sickle cell disease or thalassemia.
Key facts
- Who runs it
- Cyprus Institute of Neurology and Genetics
- Where
- Larnaca, Limassol, Nicosia, and Paphos, CyprusSee the 4 sitesAlso in 15 other countries, 22 sites
- Trial code
- Registry title
- Study of the Role of Genetic Modifiers in Hemoglobinopathies
- Status
- Recruiting
- People taking part
- 30,000 people, planned
- Started
- 1 Oct 2022
- Expected to end
- 30 Sept 2027
- Type of study
- Observational
- Treatments tested
- GWAS
- Record updated
- 20 March 2024
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with an inherited blood disorder of haemoglobin: sickle cell disease, beta-thalassemia or alpha-thalassemia. It studies genes that change how these diseases behave.
- Age
- 2 years or older at the time the study data are collected.
- Sex
- All sexes can join. There are no limits by gender or ethnicity.
- Disease stage
- A clinical diagnosis of an inherited hemoglobinopathy: sickle cell disease, β-thalassemia or α-thalassemia. All genotypes are considered.
- Earlier treatment
- People who were treated with stem cell transplantation or genetic therapy cannot join.
Main reasons for not taking part
- Treated with stem cell transplantation or genetic therapy
- Younger than 2 years at the time the study data are collected
- Patient, or legal representative for a minor, unwilling or unable to give consent
The registry criteria, word for word
Show all 6 criteriaShow less
Who can take part
- Clinical diagnosis of an inherited hemoglobinopathy, including sickle cell disease (SCD), β-thalassemia, and α-thalassemia; all genotypes will be considered
- Age ≥ 2 years old at the time of the collection of the phenotypic data
- There will be no limits on study participants in terms of gender, ethnicity, morbidities
Who cannot take part
- Patients treated with stem cell transplantation or genetic therapy
- Age < 2 years old at the time of the collection of the phenotypic data
- Patient or legal representative for minors unwilling or unable to give consent
Where in Cyprus
Also in 15 other countries, 22 sites
- Larnaca General HospitalLarnaca, CyprusContact: Maria Sitarou, MDTaking people
- Limassol General HospitalLimassol, CyprusContact: Michael Hadjigavriel, MDTaking people
- Archbishop Makarios III HospitalNicosia, CyprusContact: Soteroula Christou, MDTaking people
- Paphos General HospitalPaphos, CyprusContact: Thomas Dimitriou, MDTaking people
About the trial
What the trial wants to find out
This study will investigate the role of genetic modifiers in hemoglobinopathies through a large-scale, multi-ethnic genome-wide association study (GWAS).
The group in the trial
- Cohort
Individuals with hemoglobinopathies
Treatment: GWAS
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Study of the Role of Genetic Modifiers in Hemoglobinopathies
- Plain-language title
- Looks for genes that affect sickle cell disease and thalassemiaGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 20 March 2024