MDDA IEpM Contact Registry
The MDDA IEpM Contact Registry is designed for research and clinical trial readiness. By joining the Contact Registry, you agree to be contacted about upcoming clinical trials and studies relevant to you or your family member. MDDA does not share your contact details with the researchers, we will provide you with information to assist you to contact researchers if you wish to. If you would like to be part of this Registry, please complete the form below.
Further information on the purpose of the Registry and FAQs can be found below
FAQs
The MDDA Contact Registry is database that contains contact information for patients living with an Inborn Error of protein Metabolism (IEpM). The Registry will enable MDDA to provide you with the most up-to-date information about research, clinical trials, and new therapies to evaluate possible new treatments that may be of specific interest to you and other people with an IEpM.
Researchers who are ready to start research studies or clinical trials can contact MDDA requesting MDDA notify people that may be eligible to participate in their studies. A member of the MDDA registry team will then contact you. Researchers cannot contact you directly, as they do not have access to the Registry. Participating in this contact registry is your choice and is completely voluntary.
The Australian government has made a commitment to improve access to treatments and therapies for all Australians living with a rare disease. Implementing the Registry is in line with the National Strategic Action Plan for Rare Diseases.
Participants may receive information about opportunities to participate in research, clinical trials, medical advances and other news from the registry. Participation may not benefit you personally, medically, or financially. However, your participation may help all those with an IEpM by increasing the understanding of the disease. Researchers may learn whether and how treatments work. Medical professionals may be able to improve how they treat the disease. It is your decision to participate, you can contact the researcher or clinical trial coordinator to discuss any questions you may have to assist you in making your decision.
Only MDDA authorised people will have access to the registry. We have adopted the Australian Privacy Principles (APPs) contained in the Privacy Act 1988 (Cth) (the Privacy Act). The NPPs govern the way in which we collect, use, disclose, store, secure and dispose of your Personal Information. All of the information you provide will be maintained in a safe (“secure”) compliant environment. Your information will not be shared with any third party.
If you want to be removed from the Registry, contact the MDDA Registry coordinator.
Once you complete the form, your name and email address will be sent to our Registry coordinator who will confirm that you are now a member of the registry. You are able to add more than one family member with an IEpM to the Register.
We can mail a paper copy if you prefer. We can also offer assistance to those with English as a second language by arranging a phone interpreter to assist.
Before you consent to be in a clinical trial, you should discuss your participation with your metabolic team. The main goal of the Registry is to make it easier for IEpM patients to participate in research, but there is no guarantee that you will be eligible for a trial. MDDA endeavors to notify you of research opportunities that we are aware of. In order to participate in any trial, you will need to discuss the trial with the research staff and fill out a separate informed consent form specific to the trial. Informing you about the existence of a trial does not imply that MDDA endorses it. MDDA is available to discuss any questions you may have.
If you have any questions about the Registry, please contact the MDDA Registry coordinator at [email protected].
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