BEYONDXLH is an online disease-monitoring program for patients with X-linked hypophosphatemia (XLH) and other chronic hypophosphatemic disorders.
The study is a collaborative research effort among industry (Ultragenyx Pharmaceutical, Inc.), academia (Yale University), and a patient-advocacy group (The XLH Network, Inc.) to characterize XLH and other chronic hypophosphatemic disorders from the patient perspective via a user-friendly mobile application.
Why should I sign up?
Every patient counts. Every answer counts. With enough patient participation in BEYONDXLH, we can meet the goals described below.
For You & Your Doctor
Promote long-term engagement of patients and Healthcare Providers (HCPs). Aid efforts to educate newly diagnosed patients and their families.
For Treatment Development
Evaluate long-term progression of the disorder. Increase understanding of hypophosphatemic disorders (including XLH) and contribute to the development of new tools and products.
For Regulators & Payers
Provide real-world data on health care resources and how they are used.
BEYONDXLH is a non-interventional, prospective, observational disease monitoring program conducted through a mobile/web-based application.
The program is designed to encourage patients, their doctors, and researchers to learn more about their disorders across a broad group of patients. Information collected from this diverse population will help patients and clinicians better understand the impact of the disease, improve treatment management, and inform future research.
Participation is limited to residents in the United States and Canada. All content is only offered in English at this time. All data will be self-reported by you (or legal guardian-reported if the participant is a minor).