You are invited to participate in this Adult AMC registry if you have been diagnosed with arthrogryposis and are over the age of 19 years. A group of international researchers led from the University of British Columbia in Vancouver CANADA, are creating an online AMC registry. In this registry, people with AMC would enter data online every year, so that we (patients, researchers, clinicians) could begin to learn what the key problems are for adults living with AMC. This registry has been funded in part by the grant-in aid the Canadian Institute for Health Research, the University of BC in Vancouver and the AMC Support Inc.
Arthrogryposis Multiplex Congenita (AMC) is a condition where primarily the limbs have significant limitation in motion at birth. Many individuals undergo many surgeries and extensive physiotherapy to improve range of motion. Adult with AMC at AMC support group raised concerns about surgical outcomes in adult with AMC such pain, fatigue or pain, physical challenges they face when they grow older, including financial burden or what treatment works best for long term function outcome. They want to be able to participate in longitudinal study to provide data to clinician to help make them better informed decision for ongoing care. We propose the international online database and registry for Adults with AMC by Adults with AMC. We as researchers are very interested in learning more about the natural progress and best therapies for various types of AMC and create a longitudinal online data registry.
If you participate in this registry, your data would be entirely anonymous and confidential. You will need to register in the Adult AMC registry and complete the questionnaires included in the online registry.
If you wish to participate in this registry and are comfortable with the steps described in this letter, please participate in the online registry as best you can. All data is kept confidentially and no personal identifiers are used to link to your information. By completing this registry questionnaires, we are assuming your consent for participating in this study.
If you are interested in the study, please email Dr. Bonita Sawatzky (firstname.lastname@example.org).
Bonita Sawatzky, PhD Dr. Ann Marie Davison Associate Professor, Professor, Dept. of genetics Department of Orthopaedics, UBC Kwantlen Polytechnic University.
Dr. Noémi Dahan-Oliel Assistant professor, School of Physical and Occupational Therapy, McGill University, Montreal, Quebac