8p - Data Collection Program
The 8p community is excited to participate in the RARE-X data collection program to expand our understanding of chromosome 8p rearrangements.
This will include connecting:
1. Family/patient-reported data
2. (Optional) Structured clinical research data for those that participate in our multidisciplinary neurogenetics clinic or other sites such as a conference (This is not required)
3. (Optional) Biospecimens collection and data generated from this
Caregivers: If you wish to give your own biosample (blood sample) through RARE-X, you must sign up as a BOTH a Caregiver & Patient, even if you do not have a rare disease. We ask that you enroll and complete the consent form on your behalf first. Once in the registry, you will add your hero.
Start Your Journey
Already Enrolled?
Families of 8p heroes are eligible to participate in our biosample collection program. This involves a voluntary blood sample from the 8p hero, and any interested family members. RARE-X is able to send a phlebotomist right to your home to make the blood donation as easy as possible for families.
The purpose of collecting biosamples is to encourage and expand research into 8p-related disorders.
If you are interested in donating a biosample or learning more, please contact us at biosamples@globalgenes.org.
The surveys you will take in the 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 Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…
Become an data sharer to help advance research and accelerate treatments. Please join us.
Log in to the Data Collection Program
Complete the Request Form
Request a validation code.
Confirm your email address by entering the validation code and create your password.
Login to the DCP.
Come back to update the patient’s profile if new information is available or if the patient’s information or medical condition changes.
Start Your Journey
Already Enrolled?
The Data Collection Program (DCP) collects and stores health-related information (data) about patients with rare diseases/disorders. With your permission, your de-identified data will be shared with researchers and patient organizations associated with this disease world-wide.
Any person diagnosed with a rare diseases/disorders 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…
The first step is setting up an account, followed by answering a set of questions (survey) regarding the patient’s health history, and treatment. Over time additional surveys will be added and you will be notified of future surveys relevant to you.
Your privacy is very important. 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 will be able to choose to share de-identified data with specific types of researchers (ie. 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 would like 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 is a GLOBAL data collection program. Over time additional translations will be rolled out.
The best web browsers to use for the Data Collection Program are Google Chrome or Apple Safari. Do not use Microsoft Edge or Internet Explorer.
If you have questions about this Program or consent please contact the research staff by sending an email to rarexsupport@globalgenes.org.