To make his six-year study of multiple sclerosis as powerful as possible, Dr. Philip De Jager needs blood samples from tens of thousands of patients. That’s a huge and tedious job — placing ads, interviewing subjects, and collecting samples — and it can cost as much as $1,000 to get a little blood from just one donor.
“There are very few investigators for whom it would make sense to collect this by themselves,” said De Jager, a neurologist at Brigham and Women’s Hospital who needs DNA samples, extracted from blood, to compare genetic material from healthy patients with that from people with MS. “Under a good scenario, it would take you a couple years.”
Now De Jager’s employer is simplifying this task for him and other researchers who need big data sets to hunt for little genetic variations. Partners HealthCare, parent of the Brigham and Massachusetts General Hospital, is building a huge repository of blood samples — a biobank — that scientists throughout the system can use for their studies, and at a fraction of the cost they would incur to collect samples on their own.
De Jager, among the biobank’s first users, just had to make a call to get the 1,500 samples he needed.
“It’s a very cost-efficient way to do research,” said Dr. Elizabeth W. Karlson, a Brigham physician and one of the leaders of the biobank effort.
To build up the bank, Partners has begun a campaign to solicit blood samples from as many as 100,000 people, from any Partners patients who are willing to donate — the sick and the healthy, the young and the old.
“We’re not targeting anyone,” said Susan A. Slaugenhaupt, a Mass. General geneticist and another biobank leader. “This is open to all patients.”
Partners is trying to drum up interest among patients by placing recruiters at its big hospitals and sending e-mails to 8,000 patients a week, asking them to consider donating three little tubes of blood. The effort began with a few hundred patients in a pilot program at the Brigham in 2010, but Partners has now collected samples from about 20,000 patients. It’s adding patients at a pace of about 1,500 a month, which in a few years would make it among the biggest biobanks in the country. A handful of other large US health systems have similar collections.
Tom Fryer, 67, a retired financial services professional and a Mass. General patient, had his blood drawn while at the hospital for another appointment.
Now Fryer is serving on a Partners advisory committee that recruits other patients. “It’s a longer-term effort,” he said. “You’re doing something that’s pretty neat, trying to develop a better world and a better life for our children.”
The biobank’s success will be difficult to measure right away, as medical research commonly takes years before a payoff is evident. Partners is spending $9 million over three years to launch the program, on technology, equipment, marketing, and other expenses.
The biobank itself is on the ground floor of a brick building at the edge of Cambridge’s Kendall Square. Unlike at a blood bank, where blood is stored by the pint, the samples at the biobank are stored in little tubes inside a few hulking freezers, set to -80 degrees Celsuis. As blood comes into the bank, it is separated into three components — serum, plasma, and DNA — fit for different types of research.
The samples are available only to Partners researchers, who number more than 7,500. The biobank can deliver samples within a few weeks of receiving requests. The samples cost $20 to $35 each, and though large numbers of samples can run thousands of dollars, the costs are one-10th of what researchers would spend collecting samples on their own, according to biobank leaders. These savings are especially helpful to young researchers, who have a harder time getting hefty federal research grants.
“Frequently, the most expensive part of the research is actually the patient collection,” Slaugenhaupt said.
Typically, patients who volunteer for medical research do so for a specific study of a certain disease. This is different. When patients donate to the biobank, their blood can to be used for all different kinds of research, even for multiple studies.
Patients won’t know how their samples are being used. But if in the course of research scientists discover anything medically concerning in their blood, patients will be notified.
Beginning next year, biobank leaders plan to develop genetic data on 25,000 samples, a mountain of information that will be available to all Partners researchers. All biobank samples will be attached to patients’ records, so researchers can see the medical history that goes with each vial of blood and genetic material.
Hidde Ploegh, a biochemist at Cambridge research center the Whitehead Institute, who is not involved in the biobank program, lauded the effort. But he encouraged Partners to make the blood samples available to researchers outside its system.
“That’s at one level understandable,” Ploegh said, “but I would argue that the wider the data can be shared, the more benefit we will see.”
So far, samples from the biobank have been used in more than a dozen studies. One examines the genes associated with pain tolerance. By finding the right genes, researchers could help design individualized treatments for patients struggling with pain. Other ongoing research involves diabetes, brain aneurysms, arthritis, and other conditions.
“By having a very broad base of patients, we can begin to address questions in so many different disease areas,” said Dr. Jordan W. Smoller, director of the psychiatric and neurodevelopmental genetics unit at Mass. General, “in cancer, in heart disease, in neurologic diseases, in psychiatric diseases, and in rare diseases.”