Publications

Peer-Reviewed Publications 

  1. Bright, J., Wake, K., Witkowski, M.L., ..., Heywood, J.A., Larsson, S. (2025, March). Outcomes That Matter to Patients: ICHOM as a Catalyst for Value-Based Care. NEJM Catalyst 6(4)

  2. Wicks, P., McCaffrey, S., Goodwin, K., ..., Heywood, J.A. (2018, August). Thrive Core Items - A Modular Health-Related Quality of Life Instrument for Electronic Assessment and Treatment Monitoring: Online Development and Psychometric Validation. Journal of Medical Internet Research, 20(11)

  3. Marsh, K.P., Caro, J.J., Zaiser, E., ..., Heywood, J.A., Hamed, A. (2017, December). Patient-Centered Decision Making:  Lessons From Multi-Criteria Decision Analysis for Quantifying Patient Preferences. International Journal of Technology Assessment in Health Care33(4), 495-501

  4. Wicks, P., Heywood, J.A. (2016, December). Getting stem cell patients 'on the grid’ Nature Biotechnology, 34(12), 1233-1234.

  5. Acharya, A., Bingham, K., Bradner, J., ..., Heywood, J.A., ..., Zohar, D. (2016, March). Community crystal gazing. Nature Biotechnology, 34(3),246-253.

  6. Bedlack, R.S., Vaughan, T.E., Wicks, P., ..., Heywood, J.A., Sherman, A. (2015, December). How common are ALS plateaus and reversals? Neurology 1;86(9):808-12

  7. Katic, B., Heywood, J.A., Turek, F., ..., Renger, J.J. (2015, August). New approach for analyzing self-reporting of insomnia symptoms reveals high rate of comorbid insomnia across a wide spectrum of chronic diseases. Sleep Medicine, 16(11):1332-1341

  8. Bedlack, R.S., Vaughan, T.E., Wicks, P., Heywood, J.A., …, Sherman, A. (2015 April 6) How Common Are "ALS Reversals?" Neurology 84(14) (P4.131)

  9. Bedlack, R., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Belsh, J. (2015, March). ALSUntangled: Introducing The Table of Evidence. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(3-4), 281-282.z

  10. Wicks, P., Heywood, J.A. (2014, November) Data Donation Could Power the Learning Health Care System, Including Special Access Programs. The American Journal of Bioethics 14(11), 27–29

  11. Wicks, P., … Heywood, J.A. (2014, November) (2014 October) Lessons Learned from the Open Research Exchange Qualith of Life Research23:36-36

  12. Heywood, J.A. (2014, September). Opinion: #IceBucketChallenge, Investing Well. The Scientist.

  13. Heywood, J.A., Zeliadt, N. (2014, May). Straight talk with...Jamie Heywood. Nature Medicine, 20(5), 457.

  14. Wicks, P., Vaughan, T.E., J.A. Heywood. (2014, January). Subjects no more: what happens when trial participants realize they hold the power? BMJ 2014; 348:g368

  15. Banerjee, A., Ingate, S., Mayall, S., ..., Heywood, J.A. (2013, January). PROSPER (Patient-Reported Outcomes Safety Event Reporting) Consortium Guidelines for Validating PRO AEs. Drug Safety, 36(10), 1001-1002.

  16. Wicks, P., Heywood, B., Heywood, J.A. (2013, January). Online platform to accelerate patient involvement in open instrument development. Quality of Life Research, 22(9), 2349-2352.

  17. Heywood, J.A. (2011, December). Interview with James Heywood by Vicki Glaser. Rejuvenation Research, 14(6), 699-703.

  18. Wicks, P., Keininger, D., Massagli, M.P., ..., Heywood, J.A. (2011, November). Perceived benefits of sharing health data between people with epilepsy on an online platform Epilepsy & Behavior, 22(3), 489-495.

  19. Wicks, P., Vaughan, T.E., Massagli, M.P., Heywood, J.A. (2011, May). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology, 29(5), 411-414.

  20. Frost, J.H., Okun, S., Vaughan, T.E., ..., Heywood, J.A., Wicks, P. (2011, January). Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe. Journal of Medical Internet Research, 13(1), e6.

  21. Wicks, P., Massagli, M., Frost, J.H., ..., Heywood, J.A. (2010, June). Sharing Health Data for Better Outcomes on PatientsLikeMe. Journal of Medical Internet Research, 12(2), e19.

  22. Bedlack, R.S., Wicks, P., Heywood, J.A., Kasarskis, E.J. (2010, May). Modifiable barriers to enrollment in American ALS research studies. Amyotrophic lateral sclerosis, 11(3), 298-303.

  23. Brownstein, C., Brownstein, J.S., Williams, D.S., ..., Heywood, J.A. (2009, October). The power of social networking in medicine. Nature Biotechnology, 27(10), 928-932.  

  24. Wicks, P., Massagli, M.P., Wolf, C., Heywood, J.A. (2009, April). Measuring function in advanced ALS: validation of ALSFRS-EX extension items. European Journal of Neurology, 16(3), 353-359.

  25. Frost, J.H., Massagli, M.P., Wicks, P., Heywood, J.A. (2008, November). How the Social Web Supports Patient Experimentation with a New Therapy: The demand for patient-controlled and patient-centered informatics. AMIA Annual Symposium Proceedings, 2008, 217-221.

  26. Scott, S., Kranz, J., Cole, J., ..., Heywood, J.A. (2008, February). Design, power, and interpretation of studies in the standard murine model of ALS. Amyotrophic lateral sclerosis, 9(1), 4-15.

  27. Janson, C.G., Ramesh, T., During, M., ..., Heywood, J.A. (2002, Jan-Feb).Human intrathecal transplantation of peripheral blood stem cells in amyotrophic lateral sclerosis. Journal of Hematotherapy & Stem Cell Research, 11(1), 101-114.

Technical Reports

  1. Aragon, T., Case, H., Colwell, R.R., ..., Heywood, J.A., ..., Williams, M. (2011, April). Improving the Nation's Ability to Detect and Respond to 21st Century Urgent Health Threats: Second Report of the National Biosurveillance Advisory Subcommittee. Report to the Advisory Committee to the Director, CDC. Centers for Disease Control and Prevention (CDC).

  2. Brilliant, L., Sosin, D., Aragon, T., ..., Heywood, J.A., ..., Venkayya, R. (2009, April).Improving the Nation's Ability to Detect and Respond to 21st Century Urgent Health Threats: First Report of the National Biosurveillance Advisory Subcommittee. Report to the Advisory Committee to the Director, CDC. Centers for Disease Control and Prevention (CDC).

ALSUntangled Series

ALDUntangled offers Systematic reviews of alternative/off-label ALS treatments.

  1. Peschansky, V., Bedlack, R.S., Quinn, C., ..., Heywood, J.A., ..., Denson, K.H. (2016, November). ALSUntangled 38: L-serine. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(7-8), 604-609.

  2. Paganoni, S., Bedlack, R.S., Fixsen, E., ..., Heywood, J.A., ..., Weber, C. (2016, August). ALSUntangled No. 37: Inosine*. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(7-8), 601-603.

  3. Bedlack, R.S., Fixsen, E., Quinn, C., ..., Heywood, J.A., ..., Mitsumoto, H. (2016, August). ALSUntangled No. 36: Accilion. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(5-6), 451-455.

  4. Fixsen, E., Bedlack, R.S., Quinn, C., ..., Heywood, J.A., ..., Mitsumoto, H. (2016, November). ALSUntangled No. 35: Hyperbaric Oxygen Therapy*. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(7-8), 598-600.

  5. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Vieira, F. (2016, November). ALSUntangled No. 34: GM604. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(7-8), 594-597.

  6. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Salmon, K. (2016, July). ALSUntangled No.33 Endotherapia. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(5-6), 446-450.

  7. Bedlack, R.S., Colin, C., Karam, C., ..., Heywood, J.A., ..., Salmon, K. (2016, April). ALSUntangled No. 32: Gluten-free diet. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(3-4), 303-306.

  8. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Salmon, K. (2016, February). ALSUntangled No.31: Protandim. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(3-4), 297-302.

  9. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Salmon, K. (2015, December). ALSUntangled No. 30: Methylcobalamin. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(1-2), 141-144.

  10. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Zach, N. (2015, June). ALSUntangled No. 29: MitoQ. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(5-6), 422-425.

  11. Bedlack, R.S., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Valor, E. (2015, June). ALSUntangled No. 28: Acupuncture. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(5-6), 419-421.

  12. Valor, E., Bedlack, R.S., Quinn, C., ..., Heywood, J.A., ..., Oster, C. (2015, June). ALSUntangled No. 27: Precision Stem Cell. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(5-6), 414-418.

  13. Bedlack, R., Quinn, C., Karam, C., ..., Heywood, J.A., ..., Oster, C. (2014, December). ALSUntangled no. 26: Lunasin. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15(7-8), 617-621.

  14. Quinn, C., Bedlack, R.S., Karam, C., ..., Heywood, J.A., ..., Oster, C. (2014, June). ALSUntangled no. 25: ursodiol. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15(5-6), 461-464.

  15. Karam, C., Sherman, A., Sinani, E., ..., Heywood, J.A., ..., Morrison, B. (2014, April). ALSUntangled No. 24: Vitamin D. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15(3-4), 300-305.

  16. Bedlack, R., Ostrow, L.W., Hardiman, O., ..., Heywood, J.A., ..., Zinman, L. (2013, November). ALSUntangled No. 23: The Rife Machine and retroviruses. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(7-8), 629-631.

  17. Ostrow, L.W., Bedlack, R.B., Hardiman, O., ..., Heywood, J.A., ..., Zinman L. (2013, December). ALSUntangled No. 22: Propofol. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(7-8), 626-628.

  18. Ostrow, L.W., Bedlack, R., Hardiman, O., ..., Heywood, J.A., ..., Morrison, B. (2013, September). ALS Untangled No. 21: Fecal transplants. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(5-6), 478-481.

  19. Fournier, C., Bedlack, R., Hardiman, O., ..., Heywood, J.A., ..., Valor, E. (2013, May). ALS Untangled No. 20: the Deanna protocol. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(4), 319-323.

  20. Bedlack, R., Hardiman, O., Heiman-Patterson, T., ..., Heywood, J.A., ..., Valor, E. (2013, December). ALSUntangled No. 19: Sodium chlorite. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(7-8), 619-622.

  21. Bedlack, R., Hardiman, O., Heiman-Patterson, T., ..., Heywood, J.A., ..., Pastula, D. (2013, January). ALSUntangled No. 18: Apoaequorin (Prevagen). Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14(2), 153-155.

  22. Bedlack, R., Hardiman, O., Heiman-Patterson, T., ..., Heywood, J.A., ..., Pastula, D. (2012, September). ALS untangled no. 17: "When ALS Is Lyme". Amyotrophic Lateral Sclerosis, 13(5), 498-500.

  23. Carter, G.T., Bedlack, R., Hardiman, O., ..., Heywood, J.A., ..., Pastula, D. (2012, June). ALSUntangled No. 16: Cannabis. Amyotrophic Lateral Sclerosis, 13(4), 400-404.

  24. Bedlack, R.S., Hardiman, O., Bertorini, T., ..., Heywood, J.A., ..., Pastula, D. (2012, May). ALS untangled 15: Coconut oil. Amyotrophic Lateral Sclerosis, 13(4), 405-407.

  25. Bedlack, R., Rice, P., Hardiman, O., ..., Heywood, J.A., ..., Pastula, D. (2012, January). ALSUntangled No. 14: Mototab. Amyotrophic Lateral Sclerosis, 13(2), 229-231.

  26. Bedlack, R.S., Hardiman, O., Bertorini, T., ..., Heywood, J.A., ..., Pastula, D. (2011, November). ALSUntangled 13: Bee venom. Amyotrophic Lateral Sclerosis, 12(6), 465-468.

  27. Bedlack, R., Hardiman, O., Bertorini, T., ..., Heywood, J.A., ..., Pastula, D. (2011, September). ALSUntangled No. 12: Dean Kraft, Energy Healer. Amyotrophic Lateral Sclerosis, 12(5), 380-382.

  28. Bedlack, R.S., Hardiman, O., Bertorini, T., ..., Heywood, J.A., ..., Pastula D. (2011, July). ALSUntangled No. 11: Nu Tech Mediworld. Amyotrophic Lateral Sclerosis, 12(4), 305-307.

  29. Mozaffar, T., Bedlack, R.S., Hardiman, O., ..., Heywood, J.A., ..., Pastula D. (2011, May). ALSUntangled No. 10: Luteolin and Lutimax. Amyotrophic Lateral Sclerosis, 12(3), 229-231.

  30. Bedlack, R.S., Hardiman, O., Dietz, J., ..., Heywood, J.A., ..., Pastula, D. (2011, February). ALSUNTANGLED 9 Blue-Green Algae (Spirulina). Amyotrophic lateral sclerosis, 12(1), 75-77.