Participate in Research via Data Collection

The Data Collection Program is open and we invite you to participate by sharing your data, which is critical for research.

When you participate in data collection, sometimes called a disease or patient registry, you’ll help accelerate research and the development of new drugs and other therapies.

Collecting data is an essential step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities.

To share your data, please visit the Data Collection portal:

On a recent family call, Dr. Nicole Wolf, one of the world’s leading clinician scientists of 4H Leukodystrophy spoke to the importance of data collection. She mentioned that this data informs the natural history of a disease and can be helpful in several ways, including:

• Counseling families what to expect of the disease
• Understanding the basic disease mechanisms
• Evaluating the effect of treatments
• Quickly identifying possible clinical trial candidates

To hear more about the importance of data collection and about our partner, RARE-X, a 501(c)3 nonprofit, you are invited to watch our Info Session on this topic: