Sep. 21, 2020
Posted by Valaree DonFrancesco
Krabbe Community United Research and Engagement Study (KrabbeCURES)
We are pleased to announce the launch of KrabbeCURES, a collaborative effort between KrabbeConnect and the National Organization for Rare Disorders (NORD) to study globoid cell leukodystrophy (Krabbe disease). KrabbeCURES supports research on Krabbe disease and how it progresses over time.
OVERVIEW OF RESEARCH STUDY
KrabbeCURES is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the globoid cell leukodystrophy community through shared knowledge. Study participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the study sponsor, KrabbeConnect will ensure that data privacy and confidentiality are strictly maintained. Participation in KrabbeCURES is free and voluntary, and participants may withdraw at any time.
KrabbeCURES is a powerful opportunity for individuals with Krabbe disease and their family members to contribute directly to research that will enhance our understanding of Krabbe disease, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of Krabbe disease. Every patient’s experience is a unique and invaluable part of the natural history of the disease.
Join the initiative at krabbecures.iamrare.org
For further information please contact [email protected]
KrabbeConnect is a 501(c)3 committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced. The organization seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophy, utilizing a multicenter network.