Data Collection Program
KDVS - Data Collection Program
The Koolen-de Vries Syndrome (KdVS) Foundation in conjunction with the entities listed below are excited to participate in a data collection to expand and improve medical research. We invite all patients, families and communities to join us in this program. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive KDVS 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.
Why Should You Participate?
The surveys you will take in the KDVS 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 KDVS Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a nonprofit created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…
How it Works:
- 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 KDVS 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 KDVS Data Collection Program are Google Chrome or Apple Safari. Do not use Microsoft Edge or Internet Explorer
Log in to the KDVS 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.
Frequently Asked Questions
The KDVS Data Collection Program (DCP) collects and stores health-related information (data) about patients with KDVS 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 KDVS 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 Data Collection Program are Google Chrome or Apple Safari. Do not use Microsoft Edge or Internet Explorer.