Objective: HD Constellation aims to create a dataset providing a longitudinal view of the Huntington’s disease (HD) course, based on physician-provided medical records in the US. The dataset will link to clinical assessment data from Enroll-HD, an ongoing global observational study and clinical research platform for individuals with HD and their families.

Background: Patient-reported medical histories, including medications, comorbidities and medical procedures, are often incomplete and inaccurate. Routinely collected Electronic Medical Records (EMRs) can be a valuable information source, including treatment patterns, detailed comorbidity profiles, lab values and healthcare resource use, to provide a more accurate record of factors relevant to disease progression. As HD can require multidisciplinary care, data is often spread across many care facilities and not readily utilisable and accessible.
 
HD Constellation is based on a novel patient-centred approach to EMR data retrieval that overcomes limitations of existing HD registries. Once a participant’s permission has been obtained, medical records are retrieved from their healthcare providers and abstracted to create a structured dataset. The resulting dataset will provide a longitudinal view of disease course, creating a richer context for studying HD.

Retrieved EMR data will be matched at an individual level to data from Enroll-HD, which collects clinical characteristics, cytosine adenine guanine (CAG) repeat lengths, and a battery of clinical assessments (motor, function, behavioural and cognitive) at baseline and annual visits thereafter.

Method: HD Constellation is a study of existing EMR data from medical care in the US. Patients must be participating in Enroll-HD, 12 years of age or older, sign informed consent or assent for medical record retrieval, abstraction and linkage, and confirmed to have the CAG expansion in their huntingtin gene. Records will be collected retrospectively for ≥7 years and prospectively for ≤3 years. Analysis-ready data will be anonymised.

Results: This study will assess feasibility and effectiveness of a patient-centred approach to aggregating and linking multiple sources of data, including EMR and registry data.

Conclusion: The data source resulting from HD Constellation will deepen understanding of natural history, disease progression and standards of care for individuals with HD in the US.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/hd-constellation-a-novel-patient-centred-approach-to-enriching-clinical-datasets-by-combining-medical-record-chart-review-and-enroll-hd/