What is a Patient Registry?

By Kathy Doherty

If you’re a member of the Lipedema Foundation community, you’re probably aware of the LF Registry, which we launched a couple of years ago. You might have already enrolled in it - and if so, we are very grateful for your participation!

But you may be wondering: What is a patient registry? Why should I get involved? And what do they do with the data they collect?

Simply put, a patient registry is a survey that gathers information about a population with a disease, syndrome, or condition, like Lipedema. It can include a wide range of information relevant to the condition, such as symptoms, demographics, quality of life, and treatments. Some patient registries may ask specific research questions or collect data on existing or emerging research findings. Others may be connected to biobanks to collect patient blood and tissue samples for research. Patient registries can also be used to help to identify and recruit participants for clinical trials.

While many patient registries are designed to evaluate patient outcomes defined by a specific disease or condition, they can also be used to gather other types of patient information as well. For example, a state public health department may be interested in learning about how well a new vaccine works, so they might create a registry for patients to enter data about their experiences and symptoms post-vaccination. Registries can be maintained by a variety of entities, including non-profits, academic medical centers, pharmaceutical companies, and medical device manufacturers, among others.

Trends in Patient Registries

The use of patient registries varies by disease, and conditions such as cancer and cardiovascular diseases have many registries, some with tens of thousands of patients. Other patient registries are geared towards diseases that are not as widely recognized, such as Lipedema, with fewer participants. The LF Registry currently has almost 2,000 participants in its database, and we are always looking for new recruits.

 In general, patient registries take one of  three forms:

  • Patient self-reported, where patients provide information about themselves through a secure website. These are often run by patients or patient advocacy organizations.

  • Professional reported, where medical professionals or researchers provide the information. These are usually spearheaded by medical, research, or academic institutions and are sometimes referred to as clinical registries, clinical data registries, and outcomes registries.

  • A combination of both types of registries.

The LF Registry is an example of a patient self-reported registry and its primary goal is to use the data to advance Lipedema research. It’s important to note that the LF Registry is driven by the voice of the patient – we take anecdotal information from our participants and turn it into usable data. By creating a patient community that is close to the source of the information, we empower not only participants but the research community as well. 

Patient registries are typically built on a secure database with a web interface and often take the form of surveys, with multiple choice and fill-in questions. The LF Registry, which is private and confidential, asks participants more than 60 questions about health-related issues, including comorbid conditions, body weights and measurements, family history of Lipedema, etc. The form takes approximately 30 minutes to an hour to fill out, and participants can save and return to it as many times as they need to.

Data risks are of great concern today, but the Lipedema Foundation takes data privacy and security protocols very seriously and has controls in place to protect each and every participant’s information. 

Understanding the Numbers

While the types of data collected and analyzed vary from one patient registry to another, most are geared towards learning more about certain aspects of the condition and what steps can be taken to improve a patient's overall quality of life. The Lipedema Foundation collects and analyzes information about three types of people: those diagnosed with Lipedema; those who think they might have Lipedema; and those who do not have Lipedema (as comparison groups).

The main objective is to learn about each participant’s first-hand experience with Lipedema and gather data on:

  • Learning what the symptoms are.

  • Understanding the barriers to diagnosis.

  • Determining how to better manage symptoms.

  • Assessing the quality-of-life impact; and

  • Developing new treatment approaches.

In the two years since the LF Registry was launched, we’ve learned a great deal about Lipedema. For example, 55% of the women in the Registry reported first symptoms at puberty or shortly thereafter, but onset at menopause (11%) or reproductive years (14%) is not uncommon. And of those who reported having symptoms around puberty, only 10% received medical help at that time.

Or let’s look at pain and fatigue – hallmarks of Lipedema for many women. Pain is often measured by clinics on the familiar 10-point scale. When asked about painful fat, women in the registry reported an average pain of 4 points, with more than 40% reporting excruciating flares in the 7-10 point range. Fatigue is currently not part of some diagnostic criteria for Lipedema – but maybe it should be. More than half of the women in the registry reported being very fatigued in the prior month.

These are sobering statistics, but they provide invaluable insight into the quality of life that a Lipedema patient might be experiencing or how genetics may play a role in a condition. And as more data is collected, patient registries can develop additional surveys to gain a better understanding of how a condition progresses, or leverage them for patient recruitment for clinical studies. For example, the LF Registry plans to include integrations with biobanks and other repositories in the near future. Stay tuned!

Getting Involved

While there are many great reasons to participate in a patient registry, perhaps the best is to be able to provide hope and better outcomes for patients and their friends, families, and caregivers. Your participation in the LF Registry can provide all sorts of information to help advance Lipedema research.

The hope is that the LF Registry will contribute to the goal of defining, diagnosing, and treating Lipedema.

We’re excited to announce that we plan to publish an LF Registry “first look” document later this year, working with professional statisticians to analyze and interpret the data we’ve collected about Lipedema thus far. If you’d like to participate, please join the LF Patient Registry. And if you’d like to learn more about patient registries, check out the National Institutes of Health, which has a list of patient registries, as well as resources for finding clinical trials.