Research & Studies
Every day, with our vision, KrabbeConnect will support the families, caregivers, and most importantly, the patients affected by Krabbe disease, by bridging the gap between science and patient knowledge.
According to the National Center for Advancing Translational Sciences (NCATS), research development faces many hurdles; the complexity in diagnosing rare diseases, widely dispersed patients and scientific experts, and high economic risk in developing a therapy that would serve a relatively small number of patients.
At KrabbeConnect, we will breakdown these research hurdles by bringing patients to the forefront of science. In this section, we equip you with the experts in Krabbe research, share scientific advances, and act as an intermediary for clinical trials. KrabbeConnect won’t focus on the rarity of the disease instead, we will focus on creating a cohesive network that will quickly resolve major challenges, enhance disease management, and build a portfolio of viable therapies.
Experts in Research
Research is progressing and here’s where you can learn more about the remarkable people and their dedicated efforts to bring a viable treatment to the bedside for Krabbe disease.
IKD/LIKD NBS Study
Are you or someone you know affected by Krabbe disease? We are now enrolling patients and parents/caregivers in a research study regarding the burden of disease in infantile and late infantile Krabbe disease.
Krabbe Clinical Trials
We invite you to learn about the clinical trials available for Krabbe disease. All clinical trialA clinical trial is research designed to understand the safety and efficacy of a drug, biologic or device. There are 4 phases to most clinical trials from Phase 1 that seeks to answer safety concern information should be discussed with your medical team to ensure you understand the risks/benefits of participation.