Why should I participate in the CFR?

Why should I participate in the CFR?

We need your help to learn more about individuals with SLSMD and provide researchers and pharmaceutical companies the data to pursue novel avenues towards a cure.

We believe you should register because:

  1. As a person living with a SLSMD disorder, you know your disease better than anyone. When you take surveys about your daily experiences and symptoms and share your medical records, you can help create a key resource for research. Every piece of data expands the information that researchers can draw from.
  2. Your voice matters in rare disease research! SLSMD disorders are rare so each person who chooses to participate can greatly expand the information available to researchers.
  3. It’s secure and easy to participate. Registration is simple and completed entirely online. With your informed consent to participate in research, you can contribute health data through surveys and by uploading medical records.  The CFR is built to protect your identity and privacy.
  4. Your data can help bring us closer to a cure. The CFR data may help research and clinical trial progress more quickly and more efficiently. The data will be a powerful tool for clinical trials, treatments, and improved care.