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This observational platform aims to learn from the experiences of all EHE patients by collecting real-time, deidentified data from medical records to identify treatments that may show promise in EHE patients.
As part of your participation, you will receive a consolidated, structured summary of your medical records.
Your medical history is a rich source of information that may accelerate the discovery of effective treatments for people living with EHE. Together, EHE patients can leverage their medical records to advance clinical science.
If you have been diagnosed with EHE, you are rare – less than 1 in 1 million people are diagnosed with EHE. By combining your medical data with that of other EHE patients – without sharing your identity – doctors and researchers can identify and prioritize treatments that may show promise.
EHE presents differently in different people, making it hard for doctors and researchers to collect data from enough patients to understand how to treat or manage all of its different presentations. Combining data allows doctors and researchers to review more data on different kinds of presentations.
Data can help answer essential research questions and meaningfully advance clinical science. You are powering the acceleration of research!
This study is conducted by xCures in collaboration with partners including The EHE Foundation. xCures is responsible for the study and for giving you written notices, forms, and other information about your participation in the study.
xCures Inc. operates an AI-assisted platform that prospectively generates real-world evidence for clinical studies and decentralized clinical trials. xCures was formed from a non-profit patient advocacy organization to create the technology necessary to conduct real-time clinical research and maintain patient centricity in its mission. xCures seeks to create the highest quality clinical data with the least burden possible on patients and their medical care team. The xCures platform captures clinical data directly from medical records in a HIPAA-compliant database according to an IRB-approved research study. The data captured is regulatory-grade and suitable for high-quality data analysis by clinicians and researchers to characterize potentially successful treatments in use today. Drug developers may license the consolidated and de-identified data to help advance new treatments.
There is no cost to join this study.
You will not be paid for the information you provide.
The study data does not include information that identifies you. Only authorized persons on the study team have access to your identifiable information. Information and data about you may be shared with researchers, but your identifying information will not be shared or disclosed outside of the study team without your permission. Privacy-preserving technology may be used to find and link the data collected with data from other researchers. This technology is called tokenization and allows researchers, including the study team, to confirm your data without sharing any identifying information about you.
Participating in this study is completely voluntary. It is up to you to decide if you want to participate. If you choose not to, you will not lose any benefits you might otherwise be entitled to, and your health care will not be affected.
We may contact your healthcare providers when needed to obtain medical records as part of your participation in this observational study.
Your Care Summary is perfect to bring to your next appointment with your oncologist and is especially helpful when you are meeting a new doctor who is unfamiliar with your case. It also educates you and your caregivers about your history. Remember, you are a member of your care team!
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