VR Foundation Launches Online Vitiligo Health Record for Dermatologists and Patients

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The first electronic patient record and biosample registry, developed by the Vitiligo Research Foundation, goes live on the 1st of October, giving vitiligans an incredible opportunity to take a proactive role in finding a cure for vitiligo and in tracking their own disease progression and treatment.

Traditional electronic health record (EHR) systems are designed to help optimize insurance company billing and to manage individual patient care. They are often free-text rather than based on quantifiable and reportable entry fields such as checkboxes, radio buttons, and drop down lists.

CloudBank is a full-purpose R&D solution that serves as a stable, scalable platform for integrating data from multiple sources, such as from Vitiligo EHR, Vitiligo Biobank, laboratories and clinics, for downstream therapy development. It condenses large volumes of research-quality data, enabling investigators to analyze multiple anonymous profiles, treatments and lab results. With the launch of the CloudBank, outcomes studies in vitiligo can be conducted on a global scale for the first time.

CloudBank is being introduced in a staged roll-out with functionality continuously being enhanced for patients and health specialists alike. The dedicated portal is clear, easy to use and offers patients an opportunity to collate, focus and streamline their patient data as well as take an active role in the fight against vitiligo. Another feature being introduced will allow users to check the internal database for vitiligo specialists, connect with them, receive medical advice and treatment plans as well as grant the specialist permission to read and modify and enter data in their vitiligo patient record.

As Yan Valle, CEO of the VR Foundation puts it: “The CloudBank bio-IT system addresses those early adopter of technology, patients and practitioners alike, who are aware of how technology and more specifically the internet, can really work for them and make a difference in how they access and provide healthcare.”

Ongoing development and collaboration with patients, practitioners and scientists mean that the CloudBank resource is set to become a powerful resource in the hunt for a cure for vitiligo and an equally powerful data tool for patients and doctors in an increasingly busy and tech reliant world. The CloudBank system is free for all vitiligo patients and will always be, as all running costs are funded by the Vitiligo Research Foundation. This system is compliant with HIPAA and Meaningful Use Level 1 requirements. CloudBank development is being supported by Carbon Valley, a new provider of disease-specific and condition-specific software solutions to the worldwide healthcare industry, who were incredibly generous with their time and energy.

About Vitiligo

Vitiligo is an under-investigated skin disease that affects between 65 and 95 million people worldwide. Vitiligo is a generally unpredictable disease, which results in a loss of inherited skin color over the lifetime. It is non-lethal and it does not cause any organic harm, but it has a devastating socioeconomic and psychological effect on the affected person and their family, especially in populations with darker skin.

About the Vitiligo Research Foundation

The VR Foundation is a 501(c)3 non-profit, disease-specific foundation. As the nation's only organization addressing every phase of vitiligo treatment development, the VRF works with a diverse group of support organizations and individuals to achieve measurable and timely results. When it comes to finding a cure for vitiligo, VRF expects to make a difference in our lifetime.

Yan Valle
CEO, Vitiligo Research Foundation
1, Penn Plaza #6205, New York, NY

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Yan Valle
Vitiligo Research Foundation
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