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If you build a rare disease registry, will they enroll and will they use it? Methods and data from the National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD).
Hilbert JE, Kissel JT, Luebbe EA, Martens WB, McDermott MP, Sanders DB, Tawil R, Thornton CA, Moxley RT 3rd; Registry Scientific Advisory Committee. Hilbert JE, et al. Among authors: martens wb. Contemp Clin Trials. 2012 Mar;33(2):302-11. doi: 10.1016/j.cct.2011.11.016. Epub 2011 Nov 26. Contemp Clin Trials. 2012. PMID: 22155025 Free PMC article.
An expanded version of the Hammersmith Functional Motor Scale for SMA II and III patients.
O'Hagen JM, Glanzman AM, McDermott MP, Ryan PA, Flickinger J, Quigley J, Riley S, Sanborn E, Irvine C, Martens WB, Annis C, Tawil R, Oskoui M, Darras BT, Finkel RS, De Vivo DC. O'Hagen JM, et al. Among authors: martens wb. Neuromuscul Disord. 2007 Oct;17(9-10):693-7. doi: 10.1016/j.nmd.2007.05.009. Epub 2007 Jul 19. Neuromuscul Disord. 2007. PMID: 17658255
Hypothesis: neoplasms in myotonic dystrophy.
Mueller CM, Hilbert JE, Martens W, Thornton CA, Moxley RT 3rd, Greene MH. Mueller CM, et al. Cancer Causes Control. 2009 Dec;20(10):2009-20. doi: 10.1007/s10552-009-9395-y. Cancer Causes Control. 2009. PMID: 19642006 Free PMC article. Review.
What determines quality of life in inclusion body myositis?
Sadjadi R, Rose MR; Muscle Study Group. Sadjadi R, et al. J Neurol Neurosurg Psychiatry. 2010 Oct;81(10):1164-6. doi: 10.1136/jnnp.2009.183863. Epub 2010 Jul 2. J Neurol Neurosurg Psychiatry. 2010. PMID: 20601666
Open-label trial of recombinant human insulin-like growth factor 1/recombinant human insulin-like growth factor binding protein 3 in myotonic dystrophy type 1.
Heatwole CR, Eichinger KJ, Friedman DI, Hilbert JE, Jackson CE, Logigian EL, Martens WB, McDermott MP, Pandya SK, Quinn C, Smirnow AM, Thornton CA, Moxley RT 3rd. Heatwole CR, et al. Among authors: martens wb. Arch Neurol. 2011 Jan;68(1):37-44. doi: 10.1001/archneurol.2010.227. Epub 2010 Sep 13. Arch Neurol. 2011. PMID: 20837825 Free PMC article. Clinical Trial.
67 results