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Why is your participation important?
There are several ways that you can take action with the RTDC. You may join our contact registry, participate in clinical trials, or participate with associated patient advocacy groups. More information about each is featured in this section.
What is the Contact Registry?
The RTDC Contact Registry is a method by which patients with thrombotic disorders can register themselves with the RTDC in order to be contacted in the future about clinical research opportunities and updates on the progress of the RTDC 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 Rare Thrombotic Diseases Clinical Research Consortium. The Rare Thrombotic Diseases Clinical Research Consortium has been established to collect information and perform research on thrombotic disorders including antiphospholipid antibody syndrome, heparin-induced thrombocytopenia, the catastrophic antiphospholipid syndrome/thrombotic storm, thrombotic thrombocytopenic purpura, and paroxysmal nocturnal hemoglobinuria. 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 thrombotic 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 RTDC Contact Registry. Any patient with a confirmed or suspected diagnosis of a thrombotic disorder (in particular, the antiphospholipid antibody syndrome, heparin-induced thrombocytopenia, and other autoimmune thrombotic disorders, but also any other rare thrombotic disorders) 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.
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