The RDCRN Patient Contact Registry is a method by which patients with sterol and other related disorders can register themselves with STAIR in order to be contacted in the future about clinical research opportunities and updates on the progress of the STAIR 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 reason we would like to create the contact registry is to inform patients and/or parents of patients in the contact registry of clinical research studies performed in our new multi-center STAIR Clinical Research Consortium. The STAIR Clinical Research Consortium has been established to collect information and perform research on sterol and other related disorders including Smith-Lemli-Opitz Syndrome, Cerebrotendinous Xanthomatosis, Mevalonate Kinase Deficiency/Hyperimmunoglobulinemia D and Periodic Fevers Syndrome, Sjögren-Larsson Syndrome, and Niemann-Pick Type C disease. 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.
Benefits of Joining the Contact Registry include:
- Communication of open recruitment for clinical studies of your disease
- Notice of opening of new clinical sites doing research on rare diseases
- Information on activities from affiliated awareness and advocacy groups
...and future opportunities to participate in research!
Who Can Join the Contact Registry?
We encourage patients from all 50 states in the United States and every country to join the STAIR Contact Registry. Any patient with a confirmed or suspected diagnosis of a sterol or related disorder (such as Smith-Lemli-Opitz Syndrome, Cerebrotendinous Xanthomatosis, Mevalonate Kinase Deficiency/Hyperimmunoglobulinemia D and Periodic Fevers Syndrome, Sjögren-Larsson Syndrome, and Niemann-Pick Type C disease) 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.
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.