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United Parkinson Foundation Neurotransplantation Registry on adrenal medullary transplants

Presurgical, and 1- and 2-year follow-up

^*United Parkinson Foundation Neurotransplantation Registry Group. Rush University: Christopher G. Goetz, Caroline M. Tanner, Harold L. Klawans, Richard D. Penn, Glenn T. Stebbins III, Kathleen M. Shannon, Cynthia L. Comella, David W. Gilley, Robert S. Wilson, Thomas Witt. New York University: Abraham Lieberman, Enrico Fazzini, Joseph Ransohoff, Peter Berczeller, Patricia Brous, Kenneth Eng, Menek Goldstein, Brian Kaufman, Max Koslow, Linda Chin. University of South Florida: C.W. Olanow, D.W. Cahill. University of Kansas: William C. Koller, Robert Morantz, Michael Waxman. University of Southern California: Cheryl Waters. Emory University: Ray L. Watts, Alan Freeman, Roy A.E. Bakay. Columbia University: Enrico Fazzini, Stanley Fahn, Robert Goodman, Robert Solomon, Colin Weber, Gianni Pezzoli, Robert Burke, Lucien Coté. University of California Los Angeles: Charles H. Markham, Robert W. Rand, Donald P. Becker. Baylor University: Joseph Jankovic, Robert G. Grossman, Clay Goodman. University of Pittsburgh: Robert J. Coffey, Oscar M. Reinmuth, L. Dade Lunsford. University of Ottawa: J. David Grimes, Brien G. Benoit, Kelly A. Grimes. National Institutes of Health: Robert J. Plunkett, Kryztof S. Bankiewicz, Jeffrey A. Norton, Hetty L. DeVroom, Edward H. Oldfield, Rosalyn Miles, Mark Hallett, David Goldstein, Robert S. Miletich, Joan Schwartz, Sherrie Emoto, Victoria Panzer. University of California San Diego: Clifford W. Shults, Hoi S. U, Fred H. Gage.

Thirteen centers participated in a multicenter database with systematic evaluation of US and Canadian patients who had adrenal medullary transplantation for Parkinson's disease. This voluntary registry collected demographic, safety, and efficacy data using the same scoring measures over a 2-year follow-up period. Baseline data on 61 patients and 2-year follow-up data on 56 patients were compared. Eighteen percent died during the study period, and one-half of these deaths were related or questionably related to the surgery. Of the remaining 45 patients with data, global improvement, defined as an improved summed score of the "n" and "off" motor and activities of daily living functions from the Unified Parkinson's Disease Rating Scale, occurred in 32% of the patients at 2 years after surgery. At follow-up, significant group improvement persisted in the amount of daily "on" time and the quality of "off" function, but other measures were no better than baseline. When the global improvement calculation was based on the total sample and included deaths and patients lost to follow-up as "not improved," only 19% were improved 2 years after surgery. Twenty-two percent of survivors had persistent psychiatric morbidity not present prior to surgery. These data document a modest group improvement in "off" function after neurotransplantation, but a serious level of mortality and morbidity.

Address correspondence and reprint requests to Dr. C.G. Goetz, 1725 W. Harrison, Chicago, IL 60612.

Received June 7, 1991. Accepted for publication in final form July 9, 1991.

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