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Consensus-based care recommendations for adults with myotonic dystrophy type 1
- Ashizawa, T. (author)
- Gagnon, C. (author)
- Groh, W. J. (author)
- show more...
- Gutmann, L. (author)
- Johnson, N. E. (author)
- Meola, G. (author)
- Moxley, R. (author)
- Pandya, S. (author)
- Rogers, M. T. (author)
- Simpson, E. (author)
- Angeard, N. (author)
- Bassez, G. (author)
- Berggren, K. N. (author)
- Bhakta, D. (author)
- Bozzali, M. (author)
- Broderick, A. (author)
- Byrne, J. L. B. (author)
- Campbell, C. (author)
- Cup, E. (author)
- Day, J. W. (author)
- De Mattia, E. (author)
- Duboc, D. (author)
- Duong, T. (author)
- Eichinger, K. (author)
- Ekstrom, A. B. (author)
- van Engelen, B. (author)
- Esparis, B. (author)
- Eymard, B. (author)
- Ferschl, M. (author)
- Gadalla, S. M. (author)
- Gallais, B. (author)
- Goodglick, T. (author)
- Heatwole, C. (author)
- Hilbert, J. (author)
- Holland, V. (author)
- Kierkegaard, M. (author)
- Koopman, W. J. (author)
- Lane, K. (author)
- Maas, D. (author)
- Mankodi, A. (author)
- Mathews, K. D. (author)
- Monckton, D. G. (author)
- Moser, D. (author)
- Nazarian, S. (author)
- Nguyen, L. (author)
- Nopoulos, P. (author)
- Petty, R. (author)
- Phetteplace, J. (author)
- Puymirat, J. (author)
- Raman, S. (author)
- Richer, L. (author)
- Roma, E. (author)
- Sampson, J. (author)
- Sansone, V. (author)
- Schoser, B. (author)
- Sterling, L. (author)
- Statland, J. (author)
- Subramony, S. H. (author)
- Tian, C. X. (author)
- Trujillo, C. (author)
- Tomaselli, G. (author)
- Turner, C. (author)
- Venance, S. (author)
- Verma, A. (author)
- White, M. (author)
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- (creator_code:org_t)
- 2018-09-13
- 2018
- English.
- In: Neurology-Clinical Practice. - : Ovid Technologies (Wolters Kluwer Health). - 2163-0402 .- 2163-0933. ; 8:6, s. 507-520
- Research review (peer-reviewed)
Abstract
Subject headings
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- Purpose of review Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit. Recent findings The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations. The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Neurovetenskaper (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Neurosciences (hsv//eng)
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- By the author/editor
- Ashizawa, T.
- Gagnon, C.
- Groh, W. J.
- Gutmann, L.
- Johnson, N. E.
- Meola, G.
- show more...
- Moxley, R.
- Pandya, S.
- Rogers, M. T.
- Simpson, E.
- Angeard, N.
- Bassez, G.
- Berggren, K. N.
- Bhakta, D.
- Bozzali, M.
- Broderick, A.
- Byrne, J. L. B.
- Campbell, C.
- Cup, E.
- Day, J. W.
- De Mattia, E.
- Duboc, D.
- Duong, T.
- Eichinger, K.
- Ekstrom, A. B.
- van Engelen, B.
- Esparis, B.
- Eymard, B.
- Ferschl, M.
- Gadalla, S. M.
- Gallais, B.
- Goodglick, T.
- Heatwole, C.
- Hilbert, J.
- Holland, V.
- Kierkegaard, M.
- Koopman, W. J.
- Lane, K.
- Maas, D.
- Mankodi, A.
- Mathews, K. D.
- Monckton, D. G.
- Moser, D.
- Nazarian, S.
- Nguyen, L.
- Nopoulos, P.
- Petty, R.
- Phetteplace, J.
- Puymirat, J.
- Raman, S.
- Richer, L.
- Roma, E.
- Sampson, J.
- Sansone, V.
- Schoser, B.
- Sterling, L.
- Statland, J.
- Subramony, S. H.
- Tian, C. X.
- Trujillo, C.
- Tomaselli, G.
- Turner, C.
- Venance, S.
- Verma, A.
- White, M.
- Winblad, Stefan, ...
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- MEDICAL AND HEALTH SCIENCES
- MEDICAL AND HEAL ...
- and Basic Medicine
- and Neurosciences
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- University of Gothenburg
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