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Open Peer Commentaries

Data Donation Could Power the Learning Health Care System, Including Special Access Programs

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REFERENCES

  • Bedlack, R., and O. Hardiman. 2009. ALSUntangled (ALSU): A scientific approach to off-label treatment options for people with ALS using tweets and twitters. Amyotrophic Lateral Sclerosis 10(3): 129–130. doi:10.1080/17482960903015986
  • Brownstein, C. A., J. S. Brownstein, D. S. Williams, P. Wicks, and J. A. Heywood. 2009. The power of social networking in medicine. Nature Biotechnology 27(10): 888–890. doi:10.1038/nbt1009-888
  • Cedarbaum, J. M., N. Stambler, E. Malta, and C. Fuller. 1999. The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences 169(1): 13–21. doi:10.1016/S0022-510X(99)00210-5
  • Chiò, A., and G. Mora. 2013. The final chapter of the ALS lithium saga. Lancet Neurology 12(4): 324–325. doi:10.1016/S1474-4422(13)70040-1
  • Fornai, F., P. Longone, L. Cafaro, et al. 2008. Lithium delays progression of amyotrophic lateral sclerosis. Proceedings of the National Academy of Sciences of the United States of America 105(6): 2052–2057. doi:10.1073/pnas.0708022105
  • Frost, J. H., M. P. Massagli, P. Wicks, and J. Heywood. 2008. How the Social Web supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics. AMIA Symposium, 217–221.
  • Gordon, P. H., D. H. Moore, R. G. Miller, et al. 2007. Efficacy of minocycline in patients with amyotrophic lateral sclerosis: A phase III randomised trial. Lancet Neurology 6(12): 1045–1053. doi:10.1016/S1474-4422(07)70270-3
  • Harrington, M., B. Heywood, S. Rura, and P. Wicks. 2014. An open research exchange for online patient feedback in pro development. Value in Health, May 1.
  • Keng, M. K., C. M. Wenzell, and M. A. Sekeres. 2013. A drug's life: The pathway to drug approval. Clinical Advances in Hematology & Oncology 11(10): 646–655.
  • Meininger, V., B. Asselain, P. Guillet, et al. 2006. Pentoxifylline in ALS: A double-blind, randomized, multicenter, placebo-controlled trial. Neurology 66(1): 88–92. doi:10.1212/01.wnl.0000191326.40772.62
  • Miller, R. G. R., J. D. J. Mitchell, and D. H. D. Moore. 2012. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews 3: CD001447–CD001447. doi:10.1002/14651858.CD001447.pub3
  • Scannell, J. W., A. Blanckley, H. Boldon, and B. Warrington. 2012. Diagnosing the decline in pharmaceutical R&D efficiency. Nature Reviews Drug Discovery 11(3): 191–200. doi:10.1038/nrd3681
  • Walker, M. J., W. A. Rogers, and V. Entwistle. 2014. Ethical justifications for access to unapproved medical interventions: An argument for (limited) patient obligations. American Journal of Bioethics 14(11): XX–XX.
  • Weber, G. M., K. D. Mandl, and I. S. Kohane. 2014. Finding the missing link for big biomedical data. Journal of the American Medical Association.
  • Wicks, P., M. Massagli, J. Frost, H. Macedo, and K. Felzer. 2008. A patient-led trial of lithium in ALS using the internet. Amyotrophic Lateral Sclerosis 9(Suppl. 1): S59.
  • Wicks, P., T. Vaughan, and J. Heywood. 2014. Subjects no more: What happens when trial participants realize they hold the power? British Medical Journal 348: g368.
  • Wicks, P., T. E. Vaughan, M. P. Massagli, and J. Heywood. 2011. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology 29(5): 411–414. doi:10.1038/nbt.1837
  • Wijesekera, L. C., and P. N. Leigh. 2009. Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases 4: 3.