One of the main activities of the North American Mitchondrial Disease Consortium (NAMDC) is to collect information on mitochondrial disease patients and their families in a Clinical Patient Registry. This registry will enable research which, due to the rarity of the diseases, would not be possible without a large database to collect information on patients from many clinics and countries. Participation in the NAMDC Clinical Patient Registry will be the first step in a new wave of coorperative research into mitochondrial diseases and potential treatments. In addition, patients enrolled in the registry will have the option of receiving periodic research updates about mitochondrial diseases, including personal notification of upcoming research projects for which they may be eligible.
Why is it important that the mitochondrial disease patient community participate?
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
Who Can Join the Clinical Patient Registry?
Any patient with confirmed, or even suspected, mitochondrial disease can join the clinical patient registry. Information on deceased patients with mitochondrial disease is also useful to our researchers.
How Do I Join the Clinical Patient Registry?
The most current list of participating Clinical Centers of Excellence can be found here on the NAMDC Website. If you are currently being treated at one of these centers, contact them. If an active center is located near you, you can contact the person listed at the Center of Excellence and ask to register for the NAMDC Clinical Patient Registry.
If no active center is located near you, contact the Coordinating Ceneter at Columbia University, and someone will help you with enrollment.
I have already submitted my information to the RCDRN Clinical Patient Registry, why should I participate in the NAMDC Clinical Patient Registry?
The RDCRN Contact Registry is a a patient populated registry that collects contact information and self diagnosis of people with rare diseases via the internet and it is a useful tool for researchers for recruitment.
The NAMDC Patient Data Registry and Biorepository is more in-depth. In order to participate in the NAMDC Patent Data Registry and Biorepository patients have to sign an informed consent form that, among other things, allows researchers to enter information from the patients’ medical records in a database. This database will be used, among other things, to refine the techniques used patient diagnosis of mitochondrial diseases, and is a far more powerful tool than a contact registry alone. If a patient wants to make a contribution to mitochondrial disease research, the absolute best thing they can do is participate in both registries. We invite you to take another step towards a cure and join the RDCRN Patient Registry, too. For information and to join the RDCRN Patient Registry click here.