INAD/PLAN DATA COLLECTION PROGRAM
The INADcure Foundation has partnered with RARE-X to build a data collection program for INAD/PLAN.
By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking treatments for INAD.
RARE-X, like us, is committed to breaking down the data silos that impede drug development. We chose to partner with RARE-X because we hope that by leveraging RARE-X’s data collection platform in conjunction with other rare disease communities, we can increase the likelihood that INAD/PLAN will be included in cross-disease research.
One of the program’s most compelling features is that patients retain ownership of their de-identified data and have complete control over who has access to it and how it is used. In a nutshell, the program belongs to the patients, while RARE-X provides the technology, data governance, consent support, and data security needed to run it.
Our goal is to get every INAD/PLAN family in the US and worldwide to participate in this data collection program because the more participation there is in the program, the more the INAD/PLAN community will benefit.
By clicking on the link below, you can learn more about the INAD/PLAN Data Collection Program and begin the first step in making your patient information available to researchers.
There is no cost to participate.
PLEASE READ: We want to emphasize that the INAD/PLAN data collection program powered by RARE-X does not replace the PLANready Natural History Study being conducted by Dr. Susan Hayflick and her team at Oregon Health & Science University. Enrolling in the PLANready Natural History Study is one of the most important things you can do to help the INAD/PLAN community and advance research. Click here to learn more.
Frequently Asked Questions
What is the PLAN/INAD Data Collection Program (DCP)?
The PLAN/INAD Data Collection Program (DCP) collects and stores health-related information (data) about patients with PLAN 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.
Who can participate in this program?
Any person diagnosed with PLAN/INAD 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.
How will the PLAN/INAD DCP help patients/families?
Participation in this DCP may…
What will be asked of patients participating in the Data Collection Program?
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.
How will data be kept confidential?
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.
Where is the data stored?
The data is securely stored on the RARE-X data platform and made available to researchers and patient organizations.
Who owns the data?
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.
What choices are there for data sharing?
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.
How long will the data be stored?
There is no set time limit on how long this program will store data for future research.
Will patients/guardians be contacted for clinical trials?
It is your choice if you would like to be contacted for possible clinical trials.
Can answers be updated over time?
Yes.
Do I have to answer all the questions at once, or can I leave and finish later?
You can always leave and return to complete surveys later.
Will my data be sold?
No.
Can patients quit this program?
Yes, patients can stop taking part in this program at any time for any reason.
Is this program a United States only initiative, or is it global?
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.
What is the best web browser for accessing the Data Collection Program?
The best web browsers to use for the Data Collection Program are Google Chrome, Apple Safari, or Mozilla Firefox. Do not use Microsoft Edge or Internet Explorer.
