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Items: 1 to 50 of 111

1.

Rethinking the locked-in state for people with ALS.

Albert SM, Wicks P.

Neurology. 2019 Sep 3;93(10):419-420. doi: 10.1212/WNL.0000000000008055. Epub 2019 Aug 7. No abstract available.

PMID:
31391243
2.

Beyond the hype of big data and artificial intelligence: building foundations for knowledge and wisdom.

Car J, Sheikh A, Wicks P, Williams MS.

BMC Med. 2019 Jul 17;17(1):143. doi: 10.1186/s12916-019-1382-x.

3.

Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community.

Chiauzzi E, Wicks P.

J Med Internet Res. 2019 Feb 21;21(2):e11985. doi: 10.2196/11985.

4.

A Modular Health-Related Quality of Life Instrument for Electronic Assessment and Treatment Monitoring: Web-Based Development and Psychometric Validation of Core Thrive Items.

Wicks P, McCaffrey S, Goodwin K, Black R, Hoole M, Heywood J.

J Med Internet Res. 2019 Jan 25;21(1):e12075. doi: 10.2196/12075.

5.

Lunasin does not slow ALS progression: results of an open-label, single-center, hybrid-virtual 12-month trial.

Bedlack RS, Wicks P, Vaughan T, Opie A, Blum R, Dios A, Sadri-Vakili G.

Amyotroph Lateral Scler Frontotemporal Degener. 2019 May;20(3-4):285-293. doi: 10.1080/21678421.2018.1556698. Epub 2019 Jan 21.

PMID:
30663902
6.

Patient, study thyself.

Wicks P.

BMC Med. 2018 Nov 23;16(1):217. doi: 10.1186/s12916-018-1216-2.

7.

It's time to stop saying "the mind is unaffected" in ALS.

Wicks P, Albert SM.

Neurology. 2018 Oct 9;91(15):679-681. doi: 10.1212/WNL.0000000000006303. Epub 2018 Sep 12. No abstract available.

PMID:
30209233
8.

DigitalMe: a journey towards personalized health and thriving.

Okun S, Wicks P.

Biomed Eng Online. 2018 Sep 6;17(1):119. doi: 10.1186/s12938-018-0553-x.

9.

Patients' roles and rights in research.

Wicks P, Richards T, Denegri S, Godlee F.

BMJ. 2018 Jul 25;362:k3193. doi: 10.1136/bmj.k3193. No abstract available.

PMID:
30045909
10.

Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States.

Thorley EM, Iyer RG, Wicks P, Curran C, Gandhi SK, Abler V, Anderson KE, Carlozzi NE.

Patient. 2018 Oct;11(5):547-559. doi: 10.1007/s40271-018-0312-x.

11.

Scaling PatientsLikeMe via a "Generalized Platform" for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising.

Wicks P, Mack Thorley E, Simacek K, Curran C, Emmas C.

J Med Internet Res. 2018 May 7;20(5):e175. doi: 10.2196/jmir.9909.

12.
13.

No tears in heaven: did the media create the pseudo-phenomenon "altitude-adjusted lachrymosity syndrome (AALS)"?

Wicks P, Lancashire L.

PeerJ. 2018 Apr 3;6:e4569. doi: 10.7717/peerj.4569. eCollection 2018.

14.

Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community.

Eaneff S, Wang V, Hanger M, Levy M, Mealy MA, Brandt AU, Eek D, Ratchford JN, Nyberg F, Goodall J, Wicks P.

Mult Scler Relat Disord. 2017 Oct;17:116-122. doi: 10.1016/j.msard.2017.07.014. Epub 2017 Jul 11.

15.

National randomized controlled trial of virtual house calls for Parkinson disease.

Beck CA, Beran DB, Biglan KM, Boyd CM, Dorsey ER, Schmidt PN, Simone R, Willis AW, Galifianakis NB, Katz M, Tanner CM, Dodenhoff K, Aldred J, Carter J, Fraser A, Jimenez-Shahed J, Hunter C, Spindler M, Reichwein S, Mari Z, Dunlop B, Morgan JC, McLane D, Hickey P, Gauger L, Richard IH, Mejia NI, Bwala G, Nance M, Shih LC, Singer C, Vargas-Parra S, Zadikoff C, Okon N, Feigin A, Ayan J, Vaughan C, Pahwa R, Dhall R, Hassan A, DeMello S, Riggare SS, Wicks P, Achey MA, Elson MJ, Goldenthal S, Keenan HT, Korn R, Schwarz H, Sharma S, Stevenson EA, Zhu W; Connect.Parkinson Investigators.

Neurology. 2017 Sep 12;89(11):1152-1161. doi: 10.1212/WNL.0000000000004357. Epub 2017 Aug 16.

16.

"Ethicolegal restrictions" restrict data sharing where it might help.

Wicks PJ.

BMJ. 2017 Jul 19;358:j3431. doi: 10.1136/bmj.j3431. No abstract available.

PMID:
28724537
17.

Clinical trials from the patient perspective: survey in an online patient community.

DasMahapatra P, Raja P, Gilbert J, Wicks P.

BMC Health Serv Res. 2017 Feb 27;17(1):166. doi: 10.1186/s12913-017-2090-x.

18.

Patients' motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe.

Bradley M, Braverman J, Harrington M, Wicks P.

Res Involv Engagem. 2016 Dec 9;2:33. doi: 10.1186/s40900-016-0047-6. eCollection 2016.

19.

Getting stem cell patients 'on the grid'.

Wicks P, Heywood J.

Nat Biotechnol. 2016 Dec 7;34(12):1228-1230. doi: 10.1038/nbt.3740. No abstract available.

PMID:
27926718
20.

It's a long shot, but it just might work! Perspectives on the future of medicine.

Wicks P, Hotopf M, Narayan VA, Basch E, Weatherall J, Gray M.

BMC Med. 2016 Nov 7;14(1):176.

21.

Medicine and the future of health: reflecting on the past to forge ahead.

Fisher D, Wicks P, Babar ZU.

J Pharm Policy Pract. 2016 Oct 25;9:33. eCollection 2016.

22.

Correction of: Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level.

Eichler GS, Cochin E, Han J, Hu S, Vaughan TE, Wicks P, Barr C, Devenport J.

J Med Internet Res. 2016 Oct 27;18(10):e271.

23.

Medicine and the future of health: reflecting on the past to forge ahead.

Fisher D, Wicks P, Babar ZU.

BMC Med. 2016 Oct 25;14(1):169.

24.

Increasing Patient Involvement in Drug Development.

Lowe MM, Blaser DA, Cone L, Arcona S, Ko J, Sasane R, Wicks P.

Value Health. 2016 Sep - Oct;19(6):869-878. doi: 10.1016/j.jval.2016.04.009. Epub 2016 May 24.

25.

Women's experiences of menopause in an online MS cohort: A case series.

Bove R, Vaughan T, Chitnis T, Wicks P, De Jager PL.

Mult Scler Relat Disord. 2016 Sep;9:56-9. doi: 10.1016/j.msard.2016.06.015. Epub 2016 Jul 1.

26.

The real-world patient experience of fingolimod and dimethyl fumarate for multiple sclerosis.

Wicks P, Rasouliyan L, Katic B, Nafees B, Flood E, Sasané R.

BMC Res Notes. 2016 Sep 7;9(1):434. doi: 10.1186/s13104-016-2243-8.

27.

PatientsLikeMe® Online Epilepsy Community: Patient characteristics and predictors of poor health-related quality of life.

de la Loge C, Dimova S, Mueller K, Phillips G, Durgin TL, Wicks P, Borghs S.

Epilepsy Behav. 2016 Oct;63:20-28. doi: 10.1016/j.yebeh.2016.07.035. Epub 2016 Aug 18.

28.

Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level.

Eichler GS, Cochin E, Han J, Hu S, Vaughan TE, Wicks P, Barr C, Devenport J.

J Med Internet Res. 2016 May 12;18(5):e110. doi: 10.2196/jmir.5130. Erratum in: J Med Internet Res. 2016 Oct 27;18(10 ):e271.

29.

National Randomized Controlled Trial of Virtual House Calls for People with Parkinson's Disease: Interest and Barriers.

Dorsey ER, Achey MA, Beck CA, Beran DB, Biglan KM, Boyd CM, Schmidt PN, Simone R, Willis AW, Galifianakis NB, Katz M, Tanner CM, Dodenhoff K, Ziman N, Aldred J, Carter J, Jimenez-Shahed J, Hunter C, Spindler M, Mari Z, Morgan JC, McLane D, Hickey P, Gauger L, Richard IH, Bull MT, Mejia NI, Bwala G, Nance M, Shih L, Anderson L, Singer C, Zadikoff C, Okon N, Feigin A, Ayan J, Vaughan C, Pahwa R, Cooper J, Webb S, Dhall R, Hassan A, Weis D, DeMello S, Riggare SS, Wicks P, Smith J, Keenan HT, Korn R, Schwarz H, Sharma S, Stevenson EA, Zhu W.

Telemed J E Health. 2016 Jul;22(7):590-8. doi: 10.1089/tmj.2015.0191. Epub 2016 Feb 17.

30.

Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia.

McCarrier KP, Bull S, Fleming S, Simacek K, Wicks P, Cella D, Pierson R.

Value Health. 2016 Jan;19(1):42-52. doi: 10.1016/j.jval.2015.10.013. Epub 2015 Dec 11.

31.

How common are ALS plateaus and reversals?

Bedlack RS, Vaughan T, Wicks P, Heywood J, Sinani E, Selsov R, Macklin EA, Schoenfeld D, Cudkowicz M, Sherman A.

Neurology. 2016 Mar 1;86(9):808-12. doi: 10.1212/WNL.0000000000002251. Epub 2015 Dec 9.

32.

New approach for analyzing self-reporting of insomnia symptoms reveals a high rate of comorbid insomnia across a wide spectrum of chronic diseases.

Katic B, Heywood J, Turek F, Chiauzzi E, Vaughan TE, Simacek K, Wicks P, Jain S, Winrow C, Renger JJ.

Sleep Med. 2015 Nov;16(11):1332-1341. doi: 10.1016/j.sleep.2015.07.024. Epub 2015 Aug 21.

33.

'Trust but verify'--five approaches to ensure safe medical apps.

Wicks P, Chiauzzi E.

BMC Med. 2015 Sep 25;13:205. doi: 10.1186/s12916-015-0451-z.

34.

Close the loop to show patients the value of taking part in research.

Wicks P.

BMJ. 2015 Aug 11;351:h4313. doi: 10.1136/bmj.h4313. No abstract available.

PMID:
26264226
35.

Patients optimizing epilepsy management via an online community: the POEM Study.

Hixson JD, Barnes D, Parko K, Durgin T, Van Bebber S, Graham A, Wicks P.

Neurology. 2015 Jul 14;85(2):129-36. doi: 10.1212/WNL.0000000000001728. Epub 2015 Jun 17.

36.

Research led by participants: a new social contract for a new kind of research.

Vayena E, Brownsword R, Edwards SJ, Greshake B, Kahn JP, Ladher N, Montgomery J, O'Connor D, O'Neill O, Richards MP, Rid A, Sheehan M, Wicks P, Tasioulas J.

J Med Ethics. 2016 Apr;42(4):216-9. doi: 10.1136/medethics-2015-102663. Epub 2015 Mar 30.

37.

Patients report worse MS symptoms after menopause: findings from an online cohort.

Bove R, Healy BC, Secor E, Vaughan T, Katic B, Chitnis T, Wicks P, De Jager PL.

Mult Scler Relat Disord. 2015 Jan;4(1):18-24. doi: 10.1016/j.msard.2014.11.009. Epub 2014 Dec 9.

PMID:
25787049
38.

Preferred features of oral treatments and predictors of non-adherence: two web-based choice experiments in multiple sclerosis patients.

Wicks P, Brandes D, Park J, Liakhovitski D, Koudinova T, Sasane R.

Interact J Med Res. 2015 Mar 5;4(1):e6. doi: 10.2196/ijmr.3776.

39.

Commentary: Measuring what matters: the case for patient generated PROMS.

Wicks P.

BMJ. 2015 Feb 10;350:h54. doi: 10.1136/bmj.h54. No abstract available.

PMID:
25670198
40.

Time to deliver patient centred care.

Richards T, Coulter A, Wicks P.

BMJ. 2015 Feb 10;350:h530. doi: 10.1136/bmj.h530. No abstract available.

PMID:
25670197
41.

Increasing patient participation in drug development.

Wicks P, Lowe M, Gabriel S, Sikirica S, Sasane R, Arcona S.

Nat Biotechnol. 2015 Feb;33(2):134-5. doi: 10.1038/nbt.3145. No abstract available.

PMID:
25658275
42.

Can we use social media to support content validity of patient-reported outcome instruments in medical product development?

Rothman M, Gnanaskathy A, Wicks P, Papadopoulos EJ.

Value Health. 2015 Jan;18(1):1-4. doi: 10.1016/j.jval.2014.10.001. Review.

43.

Measuring the burden of treatment.

Wicks P.

BMJ. 2014 Dec 10;349:g7322. doi: 10.1136/bmj.g7322. No abstract available.

PMID:
25499073
44.

Perceived stigma and adherence in epilepsy: evidence for a link and mediating processes.

Chesaniuk M, Choi H, Wicks P, Stadler G.

Epilepsy Behav. 2014 Dec;41:227-31. doi: 10.1016/j.yebeh.2014.10.004. Epub 2014 Nov 1.

PMID:
25461221
45.

The ALS ice bucket challenge - can a splash of water reinvigorate a field?

Wicks P.

Amyotroph Lateral Scler Frontotemporal Degener. 2014 Dec;15(7-8):479-80. doi: 10.3109/21678421.2014.984725. No abstract available.

PMID:
25431828
46.

Data donation could power the learning health care system, including special access programs.

Wicks P, Heywood JA.

Am J Bioeth. 2014;14(11):27-9. doi: 10.1080/15265161.2014.957627. No abstract available.

PMID:
25325808
47.

Video Q&A: Patients leading the direction of clinical research--an interview with Paul Wicks.

Wicks P.

BMC Med. 2014 Jul 18;12:118. doi: 10.1186/s12916-014-0118-1.

48.

Report of the independent panel considering the retraction of two articles in The BMJ.

Heath I, Evans S, Furberg C, Hippisley-Cox J, Krumholz H, Mulrow C, Wicks P.

BMJ. 2014 Aug 15;349:g5176. doi: 10.1136/bmj.g5176. No abstract available.

49.

Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform.

Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P.

BMC Med. 2014 Jul 2;12:109. doi: 10.1186/1741-7015-12-109.

50.

Patient-centeredness in the design of clinical trials.

Mullins CD, Vandigo J, Zheng Z, Wicks P.

Value Health. 2014 Jun;17(4):471-5. doi: 10.1016/j.jval.2014.02.012. Epub 2014 May 5.

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