Gene Testing Companies Go Door-to-Door Looking for Clues to RA, Lupus

Often times, patients with conditions such as rheumatoid arthritis (RA) and lupus are left feeling isolated and helpless. 

There are nearly 50 million Americans affected by a rheumatic disease for which there is presently no cure. Many of them are housebound.

While companies such as 23andMe have been doing “mail order” genetic testing for years, there has not been a company that brought the research directly into the homes of those affected. That is, until now.

Sanguine

Sanguine Biosciences is at the forefront of this modern medical initiative. Their approach is to directly involve patients with these life-changing and often crippling diseases. 

They also want to make it easy on people to participate in research studies.

Companies like Sanguine Biosciences collect patient blood samples for research. Sanguine’s approach is unique in that they send “mobile phlebotomists” to the patients’ homes after careful screening done online and via telephone. 

Patients sign up on the website and answer some brief questions. They must provide written proof of diagnosis given by a medical doctor. They also must be over 18 years of age.

Read More: What Is Rheumatoid Arthritis? »

A phlebotomist in the area will travel to the home of the patient, who must live within a certain radius of select metropolitan areas. The person’s blood is drawn, and the sample is sent to the company for research.

Patients are compensated for their time. Sanguine will also donate to the patient’s charity of choice on their behalf – an added incentive for patients to try this new service.

Is There a ‘Catch’ When It Comes to Mobile Phlebotomy?

Some patients could be wondering if this idea is too good to be true. 

“I read about this kind of notion, and I loved it. As a patient with arthritis, I wanted to do whatever I can to help the cause,” said Jean Klink of Bedford, Pennsylvania. “The reward for me is the research, and I pray someday that a cure can be found. I did wonder if it was too good to be true, but it’s something I’d try in the future if I could.”

We’re bridging the gap between patients and researchers in order to accelerate research for the cure.
Tyler Dornenburg, marketing manager at Sanguine Biosciences

But not everyone is as open to it.

Mary Aull, an RA patient from Philadelphia, said she went through the interview via telephone but decided not to participate in the study initiative.

Learn More: What Is Lupus? »

The terms are laid out on the company’s website and presented to patients after they sign up. The catch, perhaps, is they have to sign a medical release. Patients with RA and lupus do this all the time, but not everyone is comfortable giving their medical information to a company they don’t know much about.

Still, Sanguine is finding some willing participants.

“I had my first experience with Sanguine Biosciences last week. The phlebotomist who came to my home was one of the nicest women I’ve ever met,” said Jill Bellavance of Boston. “She fully explained everything to me and got my blood in her first attempt, which is rare for me. I found out that my blood would be involved in a study at the Cleveland Clinic, which I find exciting.”

Bellavance said she received a gift card for $50 and was able to direct a $25 gift toward the charity of her choice.

“It was a good experience, and I was happy to be a part of it,” she said. “To think they are supplying studies with RA-specific blood is awesome.” 

Bellavance said she did hesitate when signing the medical record release but eventually decided to go ahead.

“In the end, I did sign the release because I want them to be able to see everything they need to see. I see all of this as progress towards the day that RA no longer exists,” said Bellavance.

That is the goal, says Tyler Dornenburg, the marketing manager of Sanguine.

He said diseases that limit a patient’s mobility are often times the ones that don’t get as much attention from the research community. 

“There are a number of reasons for this,” said Dornenburg, “but the one we saw an opportunity to solve was the issue of accessibility.” 

He added that Sanguine is also trying to connect those affected by a disease and those trying to find treatments and cures.

“We’re bridging the gap between patients and researchers in order to accelerate research for the cure,” Dornenburg said. 

Sanguine specializes in biomarker research. The company doesn’t conduct research itself. Instead, it provides researchers with everything from study design to sample delivery, Dornenburg said.

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