OCNDS Disease Concept Model Study
The CSNK2A1 Foundation is partnering with COMBINEDBrain on a study to better understand the needs and experiences of patients with OCNDS and their caregivers. As part of this research, we are inviting individuals with a diagnosis of OCNDS—or those who care for them—to participate in a one-time, audio-recorded interview.
A disease concept model is a tool that helps researchers, doctors, and regulators understand what it’s really like to live with a specific condition. It’s built by gathering information directly from patients, families, and caregivers about the symptoms they experience, how those symptoms affect daily life, and what truly matters most to them. This is especially important in rare diseases, where each voice carries more weight and there may be limited published research. By creating a disease concept model, we can make sure that future research, treatments, and clinical trials focus on the things that have the biggest impact on real people’s lives.
Eligibility: Anyone in the world with a confirmed diagnosis of OCNDS. Must be English-speaking.
What will I need to do?: Complete a 60-90 minute interview to explore your experiences, symptoms, and challenges, with the goal of identifying what matters most to you. Your insights will directly help researchers and clinicians determine which outcomes should be prioritized in future clinical trials and healthcare strategies.
If you are interested in participating, please contact grace.e.branger@vanderbilt.edu for more information and to sign up.
We’re Looking for Adult Patients and Caregivers of Patients with OCNDS
CSNK2A1 Foundation is partnering with COMBINEDBrain for a Research Study to better understand the needs of OCNDS families.
MISSION
Researchers, together with CSNK2A1 Foundation & COMBINEDBrain, are trying to determine the most impactful symptoms of rare, genetic neurological disorders like OCNDS to inform meaningful outcome measurements in future clinical trials.
WHAT
A 60–90 minute, audio-recorded interview consisting of a conversational questionnaire about your symptoms and treatments, or those of an adult patient for whom you care, to learn how these impact you and your family.
WHY
By sharing your story, you’ll help researchers determine what matters most to the rare, genetic neurological disease community. Together, with input from patients, caregivers and other healthcare providers, we hope to inform future clinical trial outcome measurements and improve health care management of individuals with rare, genetic neurological disorders.
WHO
Individuals that are 18 years or older with a medical diagnosis of OCNDS, or individuals who care for an adult patient with a medical diagnosis of OCNDS.
HOW
If you are interested in participating, please email
grace.e.branger@vanderbilt.edu or visit
www.COMBINEDBrain.org for more information.