Oversight Committee. The Director of the Autonomic Rare Diseases Clinical Research Consortium, David Robertson, MD, reports to the Acting Dean of Vanderbilt Medical School, Jeffrey R. Balser, M.D., Ph.D. Dr Robertson receives input from the Directors of the 4 consortium sites (see figure above). The scientific input of the Oversight Committee will be communicated in teleconference_meetings. During the preparation of this proposal we had weekly teleconferences, and plan to continue with monthly teleconferences if our RDCRC is funded. In addition the investigators in the Oversight Committee will have face-to-face meetings twice yearly during the American Academy of Neurology (Spring) and the American Autonomic Society (Fall) scientific sessions. The Oversight Committee will review scientific progress, recruitment, outcomes, new developments, pilot proposals, fellowship applicants, and all aspects of management of the Consortium. Some issues, such as choice of pilot projects for support and selection of fellowship applicants for funding, must be by consensus of the Consortium Oversight Committee, so that resources are deployed in a fair and transparent way. When appropriate, this Committee may suggest changes in research direction and allocation of resources. Steering (External Advisory) Committee. The Steering Committee will also communicate directly with the Program Director and the relevant investigators, and in the event that there are matters of administration and fiscal policy, directly with the Acting Dean. Three distinguished autonomic scientists, Drs. Allyn L. Mark, William Cheshire, and Irwin J. Schatz were invited to serve in this capacity because of their expertise in clinical autonomic research. Representatives of the four major autonomic support groups, the Shy-Drager-MSA Support Group (Don Summers), the National Dysautonomia Research Foundation (Linda J. Smith), the Dysautonomia Foundation (David Brenner) and Dysautonomia Information Network (Michelle Sawicki) will also serve on the Steering Committee. Additional members might be appointed at the time of the actual beginning of the program. It is anticipated that they will serve three year rotations, with possible reappointment The Steering Committee will teleconference with the Consortium leaders at approximately three-month intervals in the first year. In addition most of the representatives of the support groups attend the American Autonomic Society meeting each year and will meet formally at that time with the Program Director and principal investigators. At these meetings, accomplishments of the program will be reviewed, progress on current aims will be evaluated, and when appropriate, areas of concentration in the program may be recommended to receive lower or higher priority. On each meeting of the Steering Committee, reexamination of all research strategies and hypothesis testing will be carried out. We anticipate that the input of the Steering Committee will lead to substantive changes in research direction and methodology. Steering (External Advisory) Committee. The Steering Committee will also communicate directly with the Program Director and the relevant investigators, and in the event that there are matters of administration and fiscal policy, directly with the Acting Dean. Three distinguished autonomic scientists, Drs. Allyn L. Mark, William Cheshire, and Irwin J. Schatz were invited to serve in this capacity because of their expertise in clinical autonomic research. Representatives of the four major autonomic support groups, the Shy-Drager-MSA Support Group (Don Summers), the National Dysautonomia Research Foundation (Linda J. Smith), the Dysautonomia Foundation (David Brenner) and Dysautonomia Information Network (Michelle Sawicki) will also serve on the Steering Committee. Additional members might be appointed at the time of the actual beginning of the program. It is anticipated that they will serve three year rotations, with possible reappointment.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
5U54NS065736-05
Application #
8538523
Study Section
Special Emphasis Panel (ZRG1-HOP-Y)
Project Start
Project End
Budget Start
2013-08-01
Budget End
2014-07-31
Support Year
5
Fiscal Year
2013
Total Cost
$152,603
Indirect Cost
$54,780
Name
Vanderbilt University Medical Center
Department
Type
DUNS #
004413456
City
Nashville
State
TN
Country
United States
Zip Code
37212
Arnold, Amy C; Okamoto, Luis E; Gamboa, Alfredo et al. (2016) Mineralocorticoid Receptor Activation Contributes to the Supine Hypertension of Autonomic Failure. Hypertension 67:424-9
Palma, Jose-Alberto (2016) Not all dysautonomias are created equal. Clin Auton Res 26:83
Loavenbruck, Adam J; Singer, Wolfgang; Mauermann, Michelle L et al. (2016) Transthyretin amyloid neuropathy has earlier neural involvement but better prognosis than primary amyloid counterpart: an answer to the paradox? Ann Neurol 80:401-11
Okamoto, Luis E; Diedrich, André; Baudenbacher, Franz J et al. (2016) Efficacy of Servo-Controlled Splanchnic Venous Compression in the Treatment of Orthostatic Hypotension: A Randomized Comparison With Midodrine. Hypertension 68:418-26
Gutiérrez, Joel V; Norcliffe-Kaufmann, Lucy; Kaufmann, Horacio (2016) Brainstem reflexes in familial dysautonomia. Reply to "Evidence of brainstem dysfunction in patients with familial dysautonomia and carriers of the IKBKAP mutation". Clin Neurophysiol 127:1749-50
Labbé, Catherine; Heckman, Michael G; Lorenzo-Betancor, Oswaldo et al. (2016) MAPT haplotype diversity in multiple system atrophy. Parkinsonism Relat Disord 30:40-5
Norcliffe-Kaufmann, Lucy; Palma, Jose-Alberto; Kaufmann, Horacio (2016) Mother-induced hypertension in familial dysautonomia. Clin Auton Res 26:79-81
Merkel, Peter A; Manion, Michele; Gopal-Srivastava, Rashmi et al. (2016) The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis 11:66
Palma, Jose-Alberto; Norcliffe-Kaufmann, Lucy; Kaufmann, Horacio (2016) An orthostatic hypotension mimic: The inebriation-like syndrome in Parkinson disease. Mov Disord 31:598-600
Norcliffe-Kaufmann, Lucy; Kaufmann, Horacio; Martinez, Jose et al. (2016) Autonomic Findings in Takotsubo Cardiomyopathy. Am J Cardiol 117:206-13

Showing the most recent 10 out of 114 publications