Why is my Participation Important?
Maintaining the Relationship Between Patients and Researchers is Vital!
The Contact Registry has been created to inform patients and/or parents of patients of clinical research studies. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.
Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.
Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.
Participation in Research Makes it Possible for Researchers to:
- provide the best possible care to patients affected by rare diseases
- improve methods in studying your disease
- achieve deeper understanding of your disease and its causes
- find new treatments
- create new studies
The RDCRN has over 150 clinical sites available, and is adding more every day!