References
- Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial ‘Clinical limits of amyotrophic lateral sclerosis’ workshop contributors. J Neurol Sci. 1994; 124: 96–107
- Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
- Cudkowicz M, Shefner J. North East ALS Study Group. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 125–7
- Miller RG, Moore DH, Jackson CE. Western ALS Study Group. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 121–4
- Meininger V. European ALS Consortium. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 133–4
- Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999; 169: 13–21
- Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQOL: balancing physical and non-physical factors in assessing quality of life in ALS Neurology. 2006;67:1659–64.
- Bowser R, Cudkowicz M, Kaddurah-Daouk R. Biomarkers for amyotrophic lateral sclerosis. Expert Rev Mol Diagn. 2006; 6: 387–98
- Cheung Y, Gordon P, Levin B. Selecting promising ALS therapies in clinical trials. Neurology. 2006; 67: 1748–51
- Bedlack RS, Traynor BJ, Cudkowicz ME. Emerging disease-modifying therapies for the treatment of motor neuron disease/amyotrophic lateral sclerosis. Expert Opin Emerging Drugs. 2007; 12: 229–52
- Traynor BJ, Alexander M, Corr B, Frost E, Hardiman O. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996 – 2000. J Neurol Neurosurg Psychiatry 2003; 74: 1258–61
- Davis S, Wright PW, Schulman SF, Hill LD, Pinkham RD, Johnson LP, et al. Participants in prospective, randomized clinical trials for resected non-small cell lung cancer have improved survival compared with non-participants. Cancer. 1985; 56: 1710–8
- Reiser J, Warner JO. The value of participating in an asthma trial. Lancet. Jan ; 1 1985; 26(18422)206–7
- Croteau H, Brisson N, Lemaire J, Latreille J. The benefit of participating to clinical research. Breast Cancer Research and Treatment. 2005; 91: 279–81
- Cudkowicz ME, Shefner JM, Schoenfeld DA, Brown RH, Johnson H, Qureshi M, et al. A randomized, placebo-controlled trial of topiramate in amyotrophic lateral sclerosis. Neurology. 2003; 61: 456–64
- Gordon PH, Moore DH, Miller RG, Florence JM, Verheijde JL, Doorish C, et al. Minocycline is not effective for amyotrophic lateral sclerosis: a phase III randomized controlled trial Lancet Neurology (in press.).
- American Medical Association Council on Scientific Affairs: visibility and cancer clinical research, patient accrual, coverage, and reimbursement. J Natl Cancer Inst. 1991;83:254–9.
- The Cancer Letter. To improve clinical trials participation, groups plan an awareness campaign The Cancer Letter. 2000;26:1–3.
- Cancer Leadership Council. Improving Communication and Public Awareness. http://www.cancersummit.org/summit_meetings/summit_IV_summary.pdf. Accessed July 21, 2007.
- Ellis P. Attitudes toward participation in randomized clinical trials in oncology: a review of the literature. Annals of Oncology. 1999; 11: 939–45
- Comis RL, Miller JD, Aldigé CR, Krebs L, Stoval E. A quantitative survey of public attitudes towards cancer clinical trials http://www.cancertrialshelp.org/static_binary/308-9.pdf. Accessed July 21, 2007.
- Lara PN, Jr, Higdon R, Lim N, Kwan K, Tanaka M, Lau DH, et al. Prospective evaluation of cancer clinical trial accrual patterns: identifying potential barriers to enrollment. J Clin Oncol. 2001; 19: 1728–33
- Grossman SA, Piantadosi S, Covahey C. Are informed consent forms that describe clinical oncology research protocols readable by most patients and their families?. J Clin Oncol. 1994; 12: 2211–5
- Daugherty CK, Lyman K, Mick R, Siegler M, Ratain MJ, et al. Differences in perceptions of goals, expectations, and level of informed consent in phase I clinical trials. Proc Am Soc Clin Oncol. 1996; 15: 352
- Daugherty CK, Kialbasa TA, Siegler M, Ratain MJ, et al. Informed consent in clinical research: a study of cancer patient understanding of consent forms and alternatives of care in phase I clinical trials. Proc Am Soc Clin Oncol. 1997; 16: 188
- Simes RJ, Tattersall MH, Coates AS, Raghavan D, Solomon HJ, Smartt H. Randomized comparison of procedures for obtaining informed consent in clinical trials of cancer. BMH 1986; 293: 1065–8
- Aaronson NK, Visser-Pol E, Leenhouts GH, Muller MJ, van der Schot AC, van Dam FS, et al. Telephone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials. J Clin Oncol 1996; 14: 984–96