#PatientReported
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karmactive.bsky.social
FuRST 2.0 tracks subtle HD changes; FOCUS-HD takes ~20 mins.

More here ⤵️
www.karmactive.com/huntingtons-...

Follow @karmactive.bsky.social

#HuntingtonsDisease #PatientReported #GeneTherapy
Huntington’s: FuRST 2.0 targets early function; AMT-130’s 3-year percent is inside - Karmactive
FuRST 2.0 puts patient reports at the center of early HD tracking, while AMT-130 posts a multi-year efficacy percent that’s driving attention—check the exact number, the 20-minute step, and what’s nex...
www.karmactive.com
October 15, 2025 at 11:43 PM
jrboehnke.bsky.social
#PersonCentred care refers to care that is respectful of and responsive to personal experiences, needs and values of service users.

How to evaluate such care? And is there a place for #PatientReported outcomes?
www.frontiersin.org/journals/hea...

#PatientCentered #HRQOL
@profbrendan.bsky.social
Frontiers | Time is now to consider how we evaluate person-centred care—the role of patient-reported outcomes
Person-centred care refers to health care that is respectful of and responsive to personal experiences, preferences, needs, goals and values of service users...
www.frontiersin.org
June 16, 2025 at 5:23 PM
jrboehnke.bsky.social
How to select relevant items for monitoring? Case example of a pragmatic process for mapping immune checkpoint inhibitor #SideEffects to items from existing item libraries ( #CTCAE #EORTC #FACIT )
jpro.springeropen.com/articles/10....

#HRQL #JPRO #PatientCentered #PatientReported #ePRO
Mapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems - Journal of Patient-Reported Outcomes
Background Monitoring for the side effects of novel therapies using patient-reported outcomes (PROs) is critical for ensuring patient safety. Existing static patient-reported outcome measures may not ...
jpro.springeropen.com
March 10, 2025 at 5:32 PM
jrboehnke.bsky.social
Interesting view by @KevinWeinfurt on the differentiation btw noticeable vs. valuable change in #patientreported outcomes:

Proposed definitions once again question the appropriateness of group-based measures for individual decisions.

#patientcentered
November 17, 2024 at 12:28 PM
jrboehnke.bsky.social
New #NAMPerspectives discussion paper:

Focusses on the great opportunities in which #patientreported outcomes could also play a key role.
It nevertheless ignores complexities of prediction.

#weaponsofmathdestruction
#PRO #QOL #HRQOL #inequality
November 17, 2024 at 12:06 PM
jrboehnke.bsky.social
New issue of #QLR sent off to print, for example with this #sysreview on the quality of simulation studies to develop #bestpractice for the analysis of #longitudinal #PRO data:


#patientreported #QOL
#longitudinal #simulation
#isoqol
November 17, 2024 at 12:05 PM
jrboehnke.bsky.social
Preview of the #QLR special section in the July issue:

#qol #patientreported #psychometrics #cat #fda
#isoqol #openaccess
November 17, 2024 at 11:59 AM
jrboehnke.bsky.social
Service user perspective on #patientreported outcomes:
"the items should be relevant and meaningful, unambiguous, easy to answer particularly when distressed, do not cause further upset, and be non-judgemental."

#reqol #qol #isoqol #qlr #openaccess
November 17, 2024 at 11:58 AM