CHAMP1 patients, families, and communities are excited to participate in data collection to expand and improve medical research.
You can begin the first step in making your patient information available to researchers.
By generating the most comprehensive CHAMP1 Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies.
Only you hold the key to unlock future discoveries.
The surveys you will take in the CHAMP1 Data Collection Program are critical to the drug and treatment development process.
Our goal is to make the process as easy as possible for you.
The CHAMP1 Data Collection Program uses a collaborative technology platform powered by RARE-X.
RARE-X is a non-profit created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing.
By participating, you are…
● Informing researchers how a disease or condition changes over time
● Enabling better data to use in clinical trials
● Reducing the time it takes to study new medicines in clinical trials
● Speeding up the time to get therapeutics to patients
● Enabling the use of data as a placebo (instead of actual patients) in a clinical trial
No clinic visits required, and there is no cost to you
Patients and Caregivers retain full control over who has access to patients’ health information
With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
Enrolling in the CHAMP1 Data Collection Program requires minimal time, and you can come back to the site at your convenience to update your information
The best web browsers to use for the CHAMP1 Data Collection Program are Google Chrome or Apple Safari.
Do not use Microsoft Edge or Internet Explorer
