Anor-Exit(R) Blog
February 29, 2024
The Power of Patient Registries & Why Anor-Exit® Has Started One
Anor-Exit® has launched a patient registry, and we want to explain what that means and why it's so crucial for our mission.
What Exactly is a Patient Registry?
A patient registry is essentially a systematic collection, storage, and analysis of medical data from a specific group of patients who share the same disease. Registries serve various vital purposes:
Understanding disease progression: They can help us discern the natural history of a disease.
Documenting treatment response: Registries track how patients respond to specific treatments.
Identifying side effects: They can help pinpoint side effects associated with particular interventions.
Assessing risk factors: Registries can contribute to identifying factors that increase the risk of developing a disease.
It's important to understand that patient registries differ from clinical trials. Unlike clinical trials, registries don't involve a control group (individuals without the disease). This means the insights gained from a patient registry, while incredibly valuable for real-world understanding, don't carry the same statistical weight as results from a randomized controlled clinical trial. However, they offer crucial insights into how treatments work in diverse populations and the actual impact on patients' lives. Historically, registries were often initiated by patient support groups for rare diseases, and the FDA strongly encourages their development.
Why a Patient Registry for Anorexia?
Anor-Exit® believes anorexia is primarily a metabolic disease that can be alleviated or even eliminated in some patients through a metabolic ketogenic intervention. While anorexia isn't considered a "rare disease," its impact is significant.
Decades of epidemiological research, particularly from Scandinavia due to their comprehensive health records, shed light on the prevalence and severity of eating disorders. Dr. Hans Hoek's 2021 report highlights some critical findings:
The overall incidence rate of anorexia nervosa has remained stable over the past decades, but there's been an increase among individuals under 15 years old.
Bulimia nervosa incidence rates have been declining.
The lifetime prevalence rates for anorexia nervosa can be up to 4% among females and 0.3% among males.
For bulimia nervosa, up to 3% of females and slightly more than 1% of males suffer from the disorder during their lifetime.
Both eating disorders carry a five or more increased mortality risk.
This alarming mortality risk underscores the severity of anorexia. While not rare, it can be a deadly disease, especially when it becomes chronic. In the US, there have even been discussions about allowing a terminal diagnosis for chronic anorexia, granting patients access to hospice care and medically assisted suicide. This tragic reality often stems from a failure of traditional treatments to provide lasting relief. At Anor-Exit®, we believe it's not the patients who fail, but rather the traditional treatments that fall short.
Given the profound impact and often devastating trajectory of anorexia, it's hard to imagine a disease more deserving of a patient registry dedicated to gathering data and improving treatment.
Our Commitment to Science and Improved Outcomes
Most traditional eating disorder treatment centers either don't maintain patient registries or don't share their data, nor do they often disclose information on "return customers." At Anor-Exit®, we primarily treat patients who haven't found success with traditional therapies. If conventional methods were consistently effective, many of our clients wouldn't be seeking alternative approaches. We would be thrilled if traditional treatment eliminated or substantially eased anorexia for most patients. However, traditional treatment is often prolonged, difficult, very costly, and frequently leads to relapses, resulting in a chronic condition.
Anor-Exit® is committed to a science-based approach, constantly refining our ketogenic metabolic program to maximize positive outcomes for each client. We diligently study clinical trial outcomes and eagerly await the results of a UC San Diego trial investigating the ketogenic diet for "weight-restored" individuals with anorexia who still struggle with anorexic thoughts and obsessions. We are so grateful UCSD received funding to enable this clinical trial to go forward. We encourage all callers to Anor-Exit® to also contact UC San Diego to see if they meet the recruitment criteria to participate in different UC San Diego trials.
To further advance the science, we ask all Anor-Exit® clients to voluntarily consent to be part of our patient registry. We will follow consenting clients for two years, assessing their mood, eating behaviors, and enjoyment of life every six months. Our goal is not to have "repeat customers"! While client names will remain confidential, the results of our research will be published, and we urge everyone involved in anorexia treatment to review these findings when they become available.