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ADLD Natural History Study

Shaping the Future of ADLD Together

Have you or a loved one been diagnosed with Autosomal Dominant Leukodystrophy (ADLD)? We are excited to launch the ADLD Natural History Study in collaboration with leading healthcare organizations. This study aims to advance our understanding of ADLD and shape future treatments. Join the fight against ADLD today
Participate in the Study
About ADLD

Our Partners

Why Your Participation
Matters?

Help Advance ADLD Research

Your participation helps researchers gain insights into how ADLD develops and progresses over time.

Shape Future Treatments

The insights collected will be instrumental in designing future clinical trials for ADLD treatment.

Enhance Patient Care

A deeper understanding of ADLD can lead to improved standards of care for all patients.

Join the ADLD Community

By participating in this study, you become an integral part of a supportive network of patients, families and researchers united in the fight against ADLD.

How to Participate?

To learn more about or participate in this study, please email us at DLDNHS@mayo.edu or call 507-293-2427. A member of our research team will reach out to arrange a phone call or on-site meeting to discuss the next steps in the enrollment process.
Learn More
Email

info@adld.center

Call

507-293-2427

What is a Natural
History Study?

A Natural History Study (NHS) is a research approach that observes and documents the progression of a disease over time without therapeutic intervention. For rare conditions like ADLD, these studies are invaluable in capturing the full spectrum of the disease, from onset to long-term impacts.

Participate in the Study
About ADLD

Why is This Study Important?

For ADLD, a rare condition with limited research, a well-executed Natural History Study is not just beneficial—it’s transformative. It lays the groundwork for future clinical trials, helps in developing targeted therapies, and provides a comprehensive understanding of the disease that can improve diagnosis and patient care.

Frequently Asked Questions

Any individual who has been diagnosed with Autosomal Dominant Leukodystrophy (ADLD) is eligible to participate in this study.
Participation Involves:
  • Completing surveys and questionnaires about your experience with ADLD
  • Sharing your medical records and health information
  • You will be monitored on a regular basis to build out a disease progression map.
  • You will be able to see a publication at the end of the retrospective study.
No, there is no cost to participate in this study. All study-related activities are provided at no charge to participants.

No, travel is not required for participation. This is a remote study that can be completed from home.

To join the study, visit the ADLD Research Hub website and create an account. After creating an account, you’ll be guided through the consent process and initial surveys
After expressing interest, you will be asked to complete an online consent form. Once consented, you’ll be able to access the initial surveys and provide information about your ADLD experience
Your Data Will Be Used To:
  • Improve understanding of ADLD progression and symptoms
  • Help prepare for future clinical trials
  • Support research to address unmet needs in the ADLD community
  • Accelerate the development of potential treatments for ADLD

All data is securely stored and managed by IRB guidelines/standards to add authenticity and protect participant privacy.