Overview
The North American Mitochondrial Disease Consortium (NAMDC) is a National Institute of Health (NIH) consortium of mitochondrial disease centers. Each of the sites will enroll patients with diagnosed mitochondrial diseases into a patient data registry. There is also a tissue biobank. The project is designed to create resources for future mitochondrial disease research projects and clinical trials.
Contact person
Sumit Parikh, MD
parikhs@ccf.org
Funding
2009-2011 NIH U54 1RC1NS070232-01 Developing a North American Mitochondrial Disease Consortium (NAMDC)
Publications
Treatment of mitochondrial disorders. Avula, S., Parikh, S., Demarest, S., Kurz, J., & Gropman, A. (2014). , Current Treatment Options In Neurology, 16(6) 292-292. doi:10.1007/s11940-014-0292-7
Nutritional interventions in primary mitochondrial disorders: Developing an evidence base. Camp, K. M., Krotoski, D., Parisi, M. A., Gwinn, K. A., Cohen, B. H., Cox, C. S., . . . Coates, P. M. (2016). Molecular Genetics And Metabolism, 119(3), 187-206. doi:10.1016/j.ymgme.2016.09.002
Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States. Karaa, A., Goldstein, A., Balcells, C., Mann, K., Stanley, L., Yeske, P. E., & Parikh, S. (2019a). Molecular Genetics And Metabolism, 127(2), 122-127. doi:10.1016/j.ymgme.2019.05.012
Primary mitochondrial disease in the US: Data from patients and physicians' perspective on health care delivery. Karaa, A., Goldstein, A., Balcells, C., Mann, K., Stanley, L., Yeske, P. E., & Parikh, S. (2019b). Data In Brief, 25, 104343-104343. doi:10.1016/j.dib.2019.104343
Mitochondrial disease patients' perception of dietary supplements' use. Karaa, A., Kriger, J., Grier, J., Holbert, A., Thompson, J. L. P., Parikh, S., & Hirano, M. (2016). Molecular Genetics And Metabolism, 119(1-2), 100-108. doi:10.1016/j.ymgme.2016.07.005
Common data elements for clinical research in mitochondrial disease: a National Institute for Neurological Disorders and Stroke project. Karaa, A., Rahman, S., Lombès, A., Yu-Wai-Man, P., Sheikh, M. K., Alai-Hansen, S., . . . Goldstein, A. (2017). Journal Of Inherited Metabolic Disease, 40(3), 403-414. doi:10.1007/s10545-017-0035-5
Outcome measures for children with mitochondrial disease: consensus recommendations for future studies from a Delphi-based international workshop. Koene, S., van Bon, L., Bertini, E., Jimenez-Moreno, C., van der Giessen, L., de Groot, I., . . . Smeitink, J. (2018). Journal Of Inherited Metabolic Disease, 41(6), 1267-1273. doi:10.1007/s10545-018-0229-5
Recommendations for the Management of Strokelike Episodes in Patients With Mitochondrial Encephalomyopathy, Lactic Acidosis, and Strokelike Episodes. Koenig, M. K., Emrick, L., Karaa, A., Korson, M., Scaglia, F., Parikh, S., & Goldstein, A. (2016). JAMA Neurology, 73(5), 591-594. doi:10.1001/jamaneurol.2015.5072
Fatigue in primary genetic mitochondrial disease: No rest for the weary. Parikh, S., Galioto, R., Lapin, B., Haas, R., Hirano, M., Koenig, M. K., . . . Karaa, A. (2019). Neuromuscular Disorders: NMD. doi:10.1016/j.nmd.2019.09.012
Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society. Parikh, S., Goldstein, A., Karaa, A., Koenig, M. K., Anselm, I., Brunel-Guitton, C., . . . Chinnery, P. F. (2017). Genetics In Medicine: Official Journal Of The American College Of Medical Genetics, 19(12). doi:10.1038/gim.2017.107
Diagnosis and management of mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society. Parikh, S., Goldstein, A., Koenig, M. K., Scaglia, F., Enns, G. M., Saneto, R., . . . DiMauro, S. (2015). Genetics In Medicine: Official Journal Of The American College Of Medical Genetics, 17(9), 689-701. doi:10.1038/gim.2014.177
Practice patterns of mitochondrial disease physicians in North America. Part 1: diagnostic and clinical challenges. Parikh, S., Goldstein, A., Koenig, M. K., Scaglia, F., Enns, G. M., Saneto, R., . . . Wolfe, L. A. (2014). Mitochondrion, 14(1), 26-33. doi:10.1016/j.mito.2013.07.116
Diagnosis of 'possible' mitochondrial disease: an existential crisis. Parikh, S., Karaa, A., Goldstein, A., Bertini, E. S., Chinnery, P. F., Christodoulou, J., . . . Rahman, S. (2019). Journal Of Medical Genetics, 56(3), 123-130. doi:10.1136/jmedgenet-2018-105800
Solid organ transplantation in primary mitochondrial disease: Proceed with caution. Parikh, S., Karaa, A., Goldstein, A., Ng, Y. S., Gorman, G., Feigenbaum, A., . . . Scaglia, F. (2016). Molecular Genetics And Metabolism, 118(3), 178-184. doi:10.1016/j.ymgme.2016.04.009
Ophthalmological findings in 74 patients with mitochondrial disease. Zhu, C.-C., Traboulsi, E. I., & Parikh, S. (2017). Ophthalmic Genetics, 38(1), 67-69. doi:10.3109/13816810.2015.1130153
Members & Collaborations
Outside Cleveland Clinic
Michio Hirano, MD
Xiomara Rosales, MD
