8p Data Collection Program -
Data Collection Program
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
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Why Should You Participate?
Your participation in the 8p Data Collection Program is critical to understanding the rare conditions and the drug and treatment development process. Our goal is to make the process as easy as possible for you. The 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…
● 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
Become an 8p data sharer to help advance research and accelerate treatments. Please join us.
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 email@example.com.
Learn more about how the RARE-X 8p Data Collection Program contributes to the Project 8p My Hero Initiative.
How it Works:
- No clinic visits required
- (Optional) Through participation in the Multidisciplinary Neurogenetic Clinic, you can consent to have data collected into your research record on the RARE-X Clinical Research Data Collection Program to be combined with your family reported data
- Participation in this program includes giving an optional blood sample that will be used to investigate the genes that cause rare disorders and potentially create models of those disorders
- All participant types (Patients, Caregivers, Family members) retain full control over who has access to the information they provide to research
- With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
- Enrolling in the 8p 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 8p Data Collection Program are Google Chrome or Apple Safari. Do not use Microsoft Edge or Internet Explorer
Log in to the 8p 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
Frequently Asked Questions
The 8p Data Collection Program (DCP) collects and stores health-related information (data) about patients with 8p from patients/families (not doctors). 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 8p 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
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 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 8p 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 sending an email to firstname.lastname@example.org or calling them at (716) 427-2739.