Website helps patients with type II diabetes find clinical trials

Seattle entrepreneur Ryan Luce has launched an online matching service, Corengi, that helps patients with type II diabetes find research studies they might want to participate in.

Think of it as a “dating” service for researchers and patients.

More than 23 million Americans now have type II diabetes, and it’s estimated that another 57 million have “pre-diabetes.”

Many of those patients, whether in the hope of gaining access to a new treatments or simply to help advance research, want to join a clinical trial, but sometimes finding the right one is not that easy.

The government maintains a clinical trial listing online, but, says Luce, the site is so complicated and jargon-filled that patients often find it’s “unusable.”

People who want to use Corengi’s service first sign up and answer about twenty questions about their health, such as their age, weight, date of diagnosis, most recent hemoglobin A1c levels (a indicator of blood sugar control), whether they are on insulin or oral medications, and whether they have other conditions such as heart disease, hypertension or high cholesterol.

The Corengi search engine (Corengi stands for “Clinical Options Research Engine”) then finds clinical trials that match their medical profile and organizes the results on the member’s personal webpage so the options are easy to sort through, says Luce.

The site updates its database every day and sends members email notices when new trials become available that match their profiles.

Members may also soon have the have the option to share information with other members, but that feature is still in the works, says Luce.

The service is free for patients, but pharmaceutical companies and others conducting research will pay Corengi to gain access to the patient’s information in an anonymized form from which the patient’s identity has been stripped out.

Luce says the privacy settings at Corengi are just as robust and secure as many other financial and medical sites.

Subscribing drug companies and researchers will also be able to send notices and messages to website’s members with Corengi acting as the go-between so that the members identities are protected, Luce says.

Dr. Patricia Fechner, an endocrinologist who conducts research and treats children with diabetes at Seattle Children’s, visited Corengi’s site and is skeptical. Dr. fechner says she thinks the site will provide some, but limited benefit for patients. “It might make it easier [to find research], but you are giving up a lot of information,” she warns.

Fechner says she finds folks for her research through her own clinics, and in traditional ways – such as by advertising in a local newspaper. Many researchers buy radio advertisements to recruit patients. Some in Seattle may have seen vivid ads for HIV vaccine research on the sides of city buses.

Seattle social media professional Dana Lewis, 22, who has Type I diabetes, sees the site a little more positively. “It is a great idea that has potential,” Lewis said.

Every consumer should be careful of what they reveal online and be savvy about privacy, Lewis says, but sharing information online also has benefits.

Transparency is key, Lewis says, and Corengi needs to make sure visitors understand the trade-off they are making in sharing information that pharmaceutical companies may purchase.

“I made the decision at age 14 to come out and be an advocate about diabetes,” said Lewis, who now works as a social media strategist for Seattle’s Swedish Hospital. But patients who are wary sharing the personal health information may want avoid joining such websites and similar online communities, she said.

Dave DeBronkart went online when he was diagnosed with an “incurable” kidney cancer a few years ago and credits the contacts he made with other patients online with finding a successful treatment.

DeBronkart, who now is a national speaker and blogger on patient empowerment and goes by the digital handle of “e-Patient Dave”, says the online world offers new opportunities and new risks. “We are in a new world, and when you enter a new world there are new risks,” DeBronkart says.

Initially, Corengi will focus on type II diabetes, but the site could serve as a template for sites that focus on other common conditions, such as Alzheimer’s, says Luce.

In the meantime, similar clinical research matching services are popping up online. The Juvenile Diabetes Research Foundation, JDRF, started a service called Clinical Connection in 2009 to link Type I patients with research. Other commercial competitors include New York-based TrialX and Miami, FL-based ClinicalConnection.

Sally James is a freelance medical writer in Seattle, who has recently written about global health research and immunotherapy for cancer. Follow her on Twitter: @jamesian. Read more here.

To learn more:

• Visit Corengi (requires registration to enter).

• Visit ePatient Dave’s website: www.epatientdave.com.

• Visit Dr. Fechner’s website at Seattle Children’s.

• Visit Dana Lewis Linkedin profile page.

• Read the National Library of Medicine’s advice on evaluating health websites and information you find online.

• If you are interested in participating in a clinical trial, read the U.S. Food and Drug Administration’s article: Basic Questions and Answers about Clinical Trials. The Mayo Clinic has also produced a good overview here.

• For additional information go to the National Library of Medicine’s MedlinePlus webpage on clinical trials.

Tags: Corengi, Diabetes, Diabetes type II, DM

Category: Diabetes, Lab Tests & Diagnostics, News