Proposing New Research Studies, Partnering with the Autonomic Disorders Consortium, and Utilizing Clinical Data and Biological Specimens:
The Autonomic Rare Disorders Research Consortium (also known as the Autonomic Disorders Consortium, or ADC) has been established not only to conduct the initial set of investigations that the investigators have outlined, but also to provide an ongoing resource for collaboration with other investigators around the world. We welcome the potential to utilize the ADC resources to advance biomedical science in areas ranging from basic laboratory to clinical therapeutics to clinical epidemiology, and other aspects of patient-oriented clinical investigation.
If you are an investigator interested in partnering with the ADC, we ask that you initially contact the Director of the ADC, Dr. David Robertson (firstname.lastname@example.org) with a brief summary (one paragraph) of your proposal. If the proposal seems feasible, you will be asked to provide a more detailed protocol summary to the entire ADC Steering Committee.
More Information About the ADC
The ADC is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in rare autonomic disorders and improving the care of patients. Funded by the National Institutes of Health (NIH), the ADC is part of the Rare Diseases Clinical Research Network. The operations of the ADC are directed from Vanderbilt University and the four primary ADC study sites include Mayo Clinic, New York University, Beth Israel Deaconess, and the NIH Clinical Center (NINDS).
All consortium sites have long traditions in discovery and treatment of autonomic disorders. The ADC will establish large longitudinal cohorts of patients with the autonomic disorders that may include:
- Postural Tachycardia Syndrome (POTS)
- Pure Autonomic Failure (PAF)
- Multiple System Atrophy / Shy-Drager Syndrome (MSA)
- Autoimmune Autonomic Ganglionopathy (AAG)
- Parkinsonism with Autonomic Failure
- Lewy Body Disease (LBD)
- Dopamine Beta-Hydroxylase Deficiency (DBH)
- Norepinephrine Transporter Dysfunction
- Familial Dysautonomia (FD)
- Baroreflex Failure
- Neurally Mediated Syncope (NMS)
- Takotsubo Syndrome