Inherited Neuropathy Consortium
The field of Charcot-Marie-Tooth disease (CMT) research is expanding, and people with the disease can help move it forward.
Discovery of the complicated genetics underlying CMT has made it clear that more studies are needed to correlate the progression, symptoms and outward manifestations of the disease with its specific genetic type.
Researchers say that understanding the differences among the various types of CMT will improve the effectiveness of clinical trials and hasten the development of targeted treatments.
Knowing which mutation a person has also could help doctors better understand the variable nature of the disease, predict its likely course, and provide more specific information about medical management, inheritance patterns (for family planning), and other concerns.
With that aim in mind, a network of centres specializing in the diagnosis and treatment of CMT is being established. While training the next generation of CMT clinical researchers, the centres will collect and record genetic, biologic and other data from people with the disease.
“The goal is to make this an international network of the leading CMT centers where everybody evaluates patients the same way,” says Professor Mary Reilly, from the MRC Centre for Neuromuscular Diseases in London.
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Maintaining the Relationship Between Patients and Researchers is Vital!
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
The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the 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.
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 every country to join the Contact Registry.
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.