How to learn about health studies for you
If you’ve been diagnosed with cancer or another disease, medical researchers need you.
Patients can choose to add their name and medical information to a “disease registry,” a secure database of people who suffer from a particular disease. Together, they form a cohort or group that researchers can learn from over time in the hopes of finding cures.
It’s also useful for patients, who can learn about clinical trials starting up in their area for which they might be eligible.
A registry is useful for researchers such as data scientists, who can “crunch the numbers” and identify possible patterns or causes of disease.
Hundreds of voluntary patient registries exist for every type of condition — from cancer, diabetes and cystic fibrosis, to heart disease, arthritis and Alzheimer’s disease. Some registries are federally funded, while others are funded by nonprofits or healthcare facilities.
NIH lists dozens of patient registries on its website at http://bit.ly/all-registries.
With all the news about privacy violations and hacked websites, some people may be reluctant to supply their medical information for an online database. However, all data is stripped of personal information and all medical information is stored on secure databases.
In addition, “Usually, a federally-funded registry has a very limited list of individuals (registry coordinators) who may have access to participants’ personal, identifying information,” NIH notes on its website.
How it works
Patients sign up on a website, filling in their medical information in an easy-to-use form. You’re typically asked a few questions about your medical history, so keep documents and test results on hand to be as specific as possible.
Once you’re signed up, expect to receive emails from the registry. Periodically you may be asked to complete additional surveys or update health information.
The registry coordinators may ask you to update your medical information or let them know if, for instance, you’ve had a cancer recurrence. They may simply keep you up to date on the current research on your disease or the status of the registry.
Participation is voluntary, and you can always withdraw your name.
A wider net
Disease registries may hasten a cure to chronic conditions or fatal diseases.
“We want to build a resource that many different investigators will use to try to [answer] questions as quickly as possible,” Mark Robson, MD, co-founder of Prospective Registry of Multi-Plex Testing (PROMPT), told the American Association for Cancer Research in 2014, when he helped launch the registry for patients whose genes are predisposed to certain cancers.
Many researchers hope these registries will save lives.
“To try to get the answers in a meaningful timeframe, we have to throw a much, much wider net and make [studies] available to a much, much broader group of people,” he said.