Frequently Asked Questions
The Data Collection Program (DCP) collects and stores health-related information (data) about patients from patients/families (not doctors). With your permission, your de-identified data will be shared with researchers and patient organizations associated with this disease worldwide.
Any person diagnosed with a rare disease or their family member/legal guardian. Even if a patient has passed away, their data still has tremendous value to researchers and may help future patients.
Participation in this DCP may…
- Contribute to further research leading to the development of treatments
- Provide patients the opportunity to participate in clinical trials
- Help you learn more about the disease, leading to better advocacy in medical, education, and social services
- Inform patients/families about the progression of the disease and how they may compare with other patients
Your privacy is paramount. Name and other personal identifiers will be removed from the data and replaced with a unique code number before data is shared with researchers. Data is encrypted (scrambled) when stored for added security.
The data is securely stored on the RARE-X data platform and made available to researchers and patient organizations.
Patients/family members who contribute their data to the Data Collection Program own and manage their data, including who has access to it and how it’s shared.
You can choose to share de-identified data with specific types of researchers (i.e. all researchers, just biomedical researchers, researchers from Biopharma, etc.)
You may choose to share identified data (name and email) with patient organizations so they may connect with you.
There is no set time limit on how long this Program will store data for future research.
It is your choice if you want to be contacted for possible clinical trials.
You can always leave and return to complete surveys later.
Yes, patients can stop taking part in this Program at any time for any reason.
This program will start in the United States. However, any English-speaking user can enter their data from anywhere in the world. Over time, the data collection program will roll out globally with translations beyond English.
The best web browsers to use for the Data Collection Program are Google Chrome, Microsoft Edge, or Apple Safari V14 or higher. Do not use Internet Explorer.
If you have questions about this Program or consent, please contact the research staff by emailing RarexSupport@globalgenes.org or calling them at 1-619-727-6094.