The Rare Diseases Clinical Research Network (RDCRN) LDN Contact Registry is a way for patients with lysosomal diseases and their family members to learn about LDN research studies they may be able to join. Participation is completely voluntary and you may choose to withdraw at any time. There is no cost to join the Contact Registry.
- Contribute to knowledge about rare diseases by answering questions about yourself, your health, and your quality of life. We may also ask you questions about your family history.
- It may take from 5 to 30 minutes to answer the questions.
- Opportunities to participate in studies that may lead to improved care and outcomes for patients with rare diseases
- Updating information you have already entered
- Providing more information
- You can choose to share your information directly with LDN study doctors, research staff and patient advocacy groups (PAGs).
- Your information will be stored in our secure database and kept confidential to the extent permitted by law.
- We will contact you when new LDN research studies are available.
- We will contact you when new LDN clinical sites are available.
- We may send you information about rare disease.
- We may provide you with study results.
Click “Join” to begin enrolling in the RDCRN LDN Contact Registry. You will be asked to provide consent and authorize use and disclosure of protected health information during enrollment.
Already joined? Login here
Contact the RDCRN at RDCRNContactRegistry@epi.usf.edu if you have questions about the RDCRN Contact Registry.