The INADcure Foundation shares information about opportunities to participate in clinical trials and other research studies. All information posted by the INADcure Foundation on this page is for informational purposes only. We do not endorse or recommend participation in any specific clinical trial/s. We encourage families to consult with their medical team prior to enrolling or participating in any of the below opportunities.
Studies below include the name of the primary contact for each study, please reach out to them directly to receive more information or to enroll.
The NBIA Research Group at Oregon Health and Science University is recruiting participants for the PLANready natural history study.
The purpose of this study is to help researchers better understand the natural history of PLAN, meaning how symptoms appear and change over time. By studying individuals with PLAN, the NBIA Research Group at OHSU hope to identify disease markers that can be used in future clinical trials. A disease marker is any symptom or measurement that happens reliably in a disease, changes predictably with disease progression, and becomes “better” with successful treatment. A disease marker could be an MRI finding, a protein level in the blood, or a rating scale to measure symptoms or function. Natural history studies provide data that serve as the foundation for future drug trials.
If you or someone you know is interested in participating in the study, please contact Allison Gregory at phone: 503-494-4344 or by email at [email protected]
Click here to be re-directed to the PLANready website for more information.
Retrotope is currently recruiting participants for a natural history study about Infantile Neuroaxonal Dystrophy (INAD). A natural history study is a study that follows a group of people over time who have, or are at risk of developing, a specific medical condition or disease. A natural history study collects health information in order to understand how the medical condition or disease develops and how to treat it. In this study we plan to collect information about INAD through a combination medical records and interviewing patients’ families. The purpose of this study is to define the natural history of INAD and demonstrate how INAD progresses. No treatment will be offered through participation in this study and participation is completely voluntary. Study participants may not benefit directly from partaking in this study, but the information generated from this study could be useful in developing future clinical trials and potential treatments for INAD.
If you or someone you know is interested in participating in the study, please contact Sarah Endemann at phone: 619-206-5944 or by email at [email protected].
You can also check www.clinicaltrials.gov, a database of privately and publicly funded clinical studies conducted around the world.