People identified to have CH or thought to have possible CH due to unexplained low blood cell counts, including low red blood cells, white blood cells, or platelets will be asked to take part in the study.
Individuals who are confirmed to have CH and provide informed consent to participate in the study will have monitoring of their CH, assessment of the risk of heart diseases, blood cancers and personalised support. The researchers will also measure people's understanding of CH and how they feel after learning about CH.
Researchers will then record the relevant information from people with CH in a central database over time to track long-term health outcomes.
The information collected from the study will help create a blueprint for doctors to provide care for people with CH in the future, and guide further research into CH in Australia.
Participants will be asked to donate blood samples for the study for research purposes including CH monitoring and testing and also provide health information for the central database.
Aged 55 years and above
Provision of written informed consent prior to any study-related assessments or procedures being carried out.
ANC < 0.5 x109/L
Hb < 80 g/L
Platelet count < 50 x 109/L
Individuals aged 55 years and over with confirmed CH (Group 1), and possible CH (Group 2) who meet the defined eligibility criteria. Around 100 participants will be recruited to the study.
Cohort
Prospective
Not listed
Establishment of CH participant registry and characterisation of CH outcomes
Number and proportion of participants with CH in a population at risk
Incidence of CH-associated complications
The incidence of CH-associated complications will be measured by: A) The number and proportion of participants with CH-associated complications (i.e., MN, CVD, CeVD, thrombosis) B) The number and proportion of participants with high CVD risk, as assessed using AusCVDRisk, and modification in individuals with CH C) The number of CV risk factors in participants with CH
Number and proportion of participants with CH with good perception and quality of life
Individual's perception and understanding of CH changes over time will be measured and assessed using the Brief Illness Perception Questionnaire (B-IPQ)
Number and proportion of participants with CH with good understanding of the condition
How an individuals' perception and understanding of CH changes over time will be measured using a custom CH survey
Click on the lead sponsor to view all of their trials.
Clinical Hub for Interventional Research (CHOIR)
Lead sponsor
Medical Research Future Fund
Collaborator
Australian National University
Collaborator
University of Auckland, New Zealand
Collaborator
The Canberra Hospital
Collaborator
