The Helix Research Network ("HRN") is a network of academic, public, and/or private healthcare organizations that are committed to advancing medical research and improving human health through large-scale genomics research and acceleration of the integration of genomic and other omics data into clinical care.
The network will create a large-scale clinicogenomics dataset, which will support research to discover molecular and genetic determinants of disease risk, disease progression, treatment response, health economic outcomes, social or behavioral determinants of health, targets for therapeutic intervention, risk stratification, clinical implementation, and other clinical indicators of interest. This clinicogenomics dataset will be used to reveal molecular and/or genetic factors that could improve the diagnosis or medical treatment of individual participants and includes a process to share individual results with participants. Participants will also receive annual reports on study outcomes and the impact of HRN, as such information becomes available. Institutional membership in HRN will consist of Helix and member healthcare systems (herein referred to as "HRN Member Site(s)"). The Helix Research Network is a multi-center research program that will enroll an unlimited number of participants. Participants will be recruited concurrently from HRN Member Sites. In some cases, HRN Member Sites may recruit participants from multiple clinical sites. Participants who meet the enrollment criteria established in this protocol will be enrolled if they or their legally authorized representative(s) provide informed consent in accordance with all applicable regulations and sIRB requirements. Participants will be enrolled until withdrawal from the study or end of the study. Participants may be recruited at any point during the study period, until the recruitment goals established by the protocol are met.
Study Type
OBSERVATIONAL
Enrollment
2,000,000
Exome sequencing will be completed on each sample submitted.
Parkview Health (DNA Insights)
Fort Wayne, Indiana, United States
RECRUITINGHealthPartners (myGenetics)
Bloomington, Minnesota, United States
Establish a Research Network
Establish a research network to support the advancement of biomedical research, improve human health through genomics research, and accelerate integration of genomic and other omics data into clinical care.
Time frame: Through study completion, average 10 years
Aggregate data
Aggregate molecular, genomic data, phenotypic and other health-related data in centralized and/or federated databases to be accessed by investigators for approved research purposes.
Time frame: Through study completion, average 10 years
Re-Contact participants
Recontact participants for additional data collection, research participation opportunities, and return of results
Time frame: Through study completion, average 10 years
Genetic biomarker identification
Identification and characterization of clinical, histological, molecular, and genetic biomarkers that are linked to disease, disease outcomes, or that might be used to improvise disease classification.
Time frame: Through study completion, average 10 years
Exploration of genetic determinants of disease
Exploration of the molecular and genetic underpinnings and determinants of disease, including disease risk, disease progression, treatment response, health economic outcomes, social or behavioral determinants of health, targets for therapeutic intervention, risk stratification, and other clinical indicators of interest.
Time frame: Through study completion, average 10 years
Collection and analysis of Patient Reported Outcomes
Collection and analysis of Patient Reported Outcomes (e.g. quality of life, physical function, symptom burden) associated with diseases that have a genetic or molecular etiology. Validation of disease-specific instruments to assess the impact of genetic screening.
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Nebraska Medicine - University of Nebraska Medical Center (Genetic Insights Project)
Omaha, Nebraska, United States
RECRUITINGRenown Health (Healthy Nevada Project)
Reno, Nevada, United States
RECRUITINGRochester Regional Health (GenoWell)
Rochester, New York, United States
RECRUITINGCone Health (Gene Connect)
Burlington, North Carolina, United States
RECRUITINGWakeMed (PreciselyYou)
Raleigh, North Carolina, United States
RECRUITINGTriHealth (DNA Discovery)
Cincinnati, Ohio, United States
RECRUITINGThe Ohio State University (Genomic Health)
Columbus, Ohio, United States
RECRUITINGSt. Luke's University Health Network (DNAanswers)
Bethlehem, Pennsylvania, United States
RECRUITING...and 4 more locations
Time frame: Through study completion, average 10 years