Two nonprofits teamed together to make a comprehensive online registry for patients and survivors of lung cancer.
For patients faced with an overwhelming diagnosis like lung cancer, finding a way to simultaneously support research to improve treatments for your disease and engage with others in your community can seem like a daunting task.
With this in mind, the Bonnie J. Addario Lung Cancer Foundation (ALCF) and the American Lung Association (ALA) have teamed up with the patient-centered data company PatientCrossroads to develop a new Lung Cancer Registry where patients from around the world — and the individuals who treat and care for them — can go to share information about their diagnosis and treatment, articulate their needs and support research into new therapies for a disease which these advocates hope will become a chronically managed one in less than a decade.
The Lung Cancer Registry was launched in November in conjunction with Lung Cancer Awareness Month, and already more than 100 patients have signed on, according to David LeDuc, executive director of ALCF. Organizers hope that approximately 250 new users will join the platform each month.
“The idea was to create one single platform that would serve many purposes for everyone in the community,” LeDuc explained in an interview with CURE.
The registry’s central mission, not surprisingly, is to benefit patients.
“We didn’t see anything out there designed to be the best of both worlds,” said LeDuc—a way that patients could provide their information, but also see how their treatment experiences compare with similar patients, and, at the same time, help to advance lung cancer research.
After completing a baseline survey about their diagnosis and treatment experience that takes only about 20 minutes, users can engage with the site regularly to participate in follow-on surveys targeted to their lung cancer subtype and, if they would like to, become part of personalized Facebook communities based on their particular lung cancer type/stage and age, for example. Coming soon will be a way for patients to learn more about clinical trial opportunities that are right for them.
In the initial survey, LeDuc said that the developers endeavored to capture information that both researchers and patients would want to know, for example: How were you diagnosed, and what were your symptoms? What healthcare practitioners did you see initially? What was your treatment, and how many lines of therapy did you have? Did you have molecular testing, and what were the results? Did you receive patient education materials?
When they’re done, patients can view a data link to see how many people around the world have participated so far and where they live; already the platform has attracted participants from several continents.
LeDuc emphasized that the Lung Cancer Registry platform is not static. “It’s not, ‘I give you this once, and it’s no longer useful.’ We want to connect people.”
One of the great values of this registry, he said, is that patients will have continuing opportunities to interact with others like them and feel like they are providing valuable information to advance research.
Patients can also add documents such as pathology reports and CT scans and really any aspect of their medical records they would like to have easy access to when moving among providers. LeDuc said that after the first of the year, the registry platform will have the functionality to connect right to the patient’s electronic medical record.
An Open-Access Platform
The platform is for anyone who has had a diagnosis of lung cancer; users don’t have to be in active treatment. Providing this kind of de-identified data and other relevant information will allow researchers to access specific patient subpopulations, for example, those whose tumors harbor an EGFR mutation, and then conduct targeted patient surveys, patient-reported outcomes and quality-of-life studies, and patient preference studies, to name only a few.
“It will be one of the only registries in the world that will have multiple data sources, as well as the ability to do follow-on searches and contacts with the patient,” LeDuc noted. Researchers will be able to do a “deeper dive,” he added, stratifying according to all kinds of patient criteria, as an example, identifying patterns and outcomes for younger ALK-positive patients who are on their third line of treatment.
Clinical Trial Recruitment
Also in the works for the registry is a mechanism whereby patients can be part of a clinical trial matching service. Those who enter will receive information on trials they are eligible for, so they can have a conversation about trial options with their physician, which is especially helpful in the smaller clinic setting, LeDuc noted.
So far, registry organizers are spreading the word about the new registry via social media platforms, and after Jan. 1, they will be reaching out directly to health care professionals, including nurse navigators and practicing physicians, to let them know about the resource and how valuable the tool can be not only for individual patients, but the lung cancer community as a whole, to have the resources congregated in one central digital location.
As ALA national president and CEO Harold P. Wimmer notes: “The registry opens the door to new opportunities to collaborate with other organizations and researchers addressing lung cancer, to share data, and to give patients the opportunity to engage in the conversation, ultimately expanding the impact of our collective efforts.”