OurGenes to Help Drive BWH Research Projects for Decades

From left, Elizabeth Karlson, Christine Seidman and Cynthia Morton are leading the OurGenes project. Photo by Stu Rosner.

BWH researchers are set to launch OurGenes, OurHealth, OurCommunity, a groundbreaking pilot project that will lay the foundation for a state-of-the-art blood sample and health information bank designed to pioneer the future of biomedical research. By combining genetic and environmental data linked with longitudinal comprehensive clinical and family medical history information from thousands of BWH patients, OurGenes will help BWH researchers and clinicians use the science of genetics to design better health care for all patients.

The OurGenes investigators are developing ways to educate patients, physicians and the community on the power of genetics in medicine. The ambitious study will establish the groundwork for innovative research to advance the understanding of etiology of human disease that will ultimately lead to personalized preventive medicine.

“This initiative will ensure that BWH remains a premier educator of clinicians and biomedical researchers and continues to lead the world in scientific and medical innovations,” said Cynthia Morton, PhD, director of the Biomedical Research Institute.

Christine Seidman, MD, director of the BWH Division of Cardiovascular Genetics, is leading OurGenes with Elizabeth Karlson, MD, director of Rheumatic Disease Epidemiology Research. “OurGenes is a sweeping endeavor,” said Seidman. “We are creating the infrastructure that will drive BWH research and medicine for decades to come.”

Beginning in July, the OurGenes study will collect blood samples consented for broad-based genetic and biomarker research, with the samples linked to the patient’s LMR (longitudinal medical record), family history and data on environmental, behavioral and lifestyle factors. The first clinical areas participating include Neurology, Cardiology, Rheumatology, Ob/GYN and the Fish Center for Women’s Health.

“Ultimately, OurGenes aims to establish a collection of samples and data from 100,000 BWH patients to support researchers with IRB-approved projects,” said Karlson.

The scope of the pilot project makes OurGenes unique when compared to other research studies, which concentrated either on select populations or a specific collection of diseases. OurGenes will examine the entire scope of human health and disease. Once the project is established, BWH researchers can access thousands of banked genotype samples linked with extensive longitudinal phenotype, health history, family history and environmental data.

OurGenes researchers worked with leaders in multiple fields to ensure that the core variables in the OurGenes information repository will provide relevant and comprehensive data to future researchers. To collect family history data, OurGenes will use the Surgeon General’s My Family Health Portrait tool, which was implemented in the BWH Family History Project spearheaded several years ago by Michael Murray, MD, of the Division of Genetics. The LMR and detailed health questionnaire will collect a wide variety of data consented for broad-based investigations.

The success of the project hinges on the number of patients who, by their participation, partner in this endeavor with BWH researchers, many of whom are also BWH patients and will enroll in this study. “If you’re looking for genetic variants, it takes big numbers to study subsets of interacting conditions,” said Morton, who already has signed her consent form and is excited to become a participant.

Patient enrollment will coincide with the patient’s existing medical appointments. To help minimize the impact of recruitment on clinic flow, researchers have established methods including surveys on tablet computers, secure Web sites and coordinated blood draws. Participation is voluntary, and patients can become part of the project by donating a small amount of blood and answering a brief survey about family health history, environmental exposures and lifestyle. Clinicians are encouraged to tell their patients about OurGenes, OurHealth, OurCommunity.

For more information, call 617-525-7102 or e-mail pirgemes@partners.org