The SGCC Contact Registry is a method by which patients with salivary gland cancer can register themselves with the SGCC in order to be contacted in the future about clinical research opportunities and updates on the progress of the SGCC research projects. The contact registry is anonymous and free of charge.
You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients. This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health.
The Salivary Gland Carcinomas Consortium has been established to collect information and perform research on salivary gland carcinoma including: Mucoepidermoid Carcinomas, Adenoid Cystic C arcinoma and Adenocarcinoma/Salivary Duct Carcinoma. 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.
Who Can Join the Contact Registry?
We encourage patients from all 50 states in the United States and every country to join the SGCC Contact Registry. Any patient with a confirmed or suspected diagnosis of salivary gland carcinoma (such as Mucoepidermoid Carcinoma, Adenoid Cystic C arcinoma or Adenocarcinoma/Salivary Duct Carcinoma) can register.
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.
Privacy
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
Join the Contact Registry : Join us in the fight to conquer rare diseases!
National Institutes of Health
