RARE Daily

Cushing’s Support and Research Foundation Collaborates with Digital Health Company on AI Diagnostic Tool

April 9, 2024

Rare Daily Staff

The digital health company Ubie is collaborating with Cushing’s Support and Research Foundation to shorten the time to diagnosis for patients with the rare endocrine disorders Cushing’s disease and Cushing’s syndrome.

The long-term collaboration will involve a validation study of Ubie’s AI-based Symptom Checker by leveraging CSRF’s community of patient advocates to gauge accuracy and provide insights that will lead to better disease prediction. The goal is to ensure the AI tool is an effective screener for Cushing’s and helps guide undiagnosed patients on to the right path of clinical care.

Cushing’s disease is caused by a pituitary tumor that signals the adrenal glands to release too much of the hormone cortisol. Cushing’s syndrome can be caused by many sources including a tumor in the adrenal gland or lung, certain steroid shots, and medications, even alcoholism and severe depression. All sources of the disease can cause complications, including high blood pressure, bone loss, weight gain, change in appearance, fatigue, anger, brain fog, and even type 2 diabetes. Cushing’s also has one of the highest rates of depression for a medical disorder (50 to 70 percent of cases). If left untreated, Cushing’s can be fatal.

Diagnosis can be difficult because symptoms are similar to other, more common illnesses. A diagnosis can be a long and complex process, taking anywhere from months to years to get a diagnosis, while patients deal with the physical, mental, and emotional toll.

Symptom Checker is free and accessible via the Internet. It is expected to close care gaps for Cushing’s and reach patients who may not have access to appropriate specialty care. The platform will provide an immediate action plan for users with a potential Cushing’s diagnosis based on global diagnostic data, and best practices advice from patients who have experienced the process. Users will also be linked to helpful resources and support, like Cushing’s Support and Research Foundation.

The collaboration has already worked to improve the Symptom Checker Cushing’s Syndrome prediction quiz. CSRF has worked with Ubie to frame the questionnaire in more patient-centric language to help patients better declare their symptoms.

“Cushing’s is considered the most difficult endocrine disease to diagnose and treat. An AI disease predictor can be a game-changing tool if it is trained by people living with the disease, and we appreciate the opportunity to work with a company whose mission is aligned with the needs of our community including earlier treatment and better quality of life,” said Leslie Edwin, president of Cushing’s Support and Research Foundation. “This partnership with Ubie supports our mission of increasing awareness of Cushing’s disease and uses our collective expertise to help reduce the impact of the disease.”

Stay Connected

Sign up for updates straight to your inbox.