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Table 2 PPI information associated with the 24 nephrology trials selected

From: Patient and Public Involvement (PPI) in outcome selection in breast cancer and nephrology trials

Trial IDs

Trial registration number

PPI information in study publication

PPI information in the study protocol

PPI information in supplementary files

Trial 1

NCT01351675

No

No

No

Trial 2

NCT00598273

No

No

No

Trial 3

NCT00081731

No

No

No

Trial 4

NCT03071263

No

No

No

Trial 5

ISRCTN45967602

No

No

No

Trial 6

NCT02476253

No

No

No

Trial 7

NCT01862419

No

No

No

Trial 8

ISRCTN99959692

No

No

No

Trial 9

JPRN-C000000008

No

No

No

Trial 10

NCT02345057

No

No

No

Trial 11

NCT02332824

No

No

No

Trial 12

NCT00396032

No

No

No

Trial 13

NCT00402168

No

No

No

Trial 14

NCT01208818

No

No

No

Trial 15

NCT00463294

No

No

No

Trial 16

NCT01767883

No

No

No

Trial 17

NCT01683409

No

No

No

Trial 18

CTI-111433

No

No

No

Trial 19

NCT01320202

No

No

No

Trial 20

ISRCTN11958993

No (steering committee members do not appear to be patients or patient representatives)

No

No

Trial 21

NCT01691053

No

No

No

Trial 22

NCT00317239

No

No

No

Trial 23

NCT01493024

Yes (interviews with some patients to test enrolment efficiency but patients were not involved in outcome selection)a

No. “In generating the protocol, we did not specifically ask for patient input, since an existing drug (sodium polystyrene sulfonate) is ingested by patients on a similar schedule and for the same reasons. That drug is not very effective and has known side effects. Our goal was to make the drug much more effective and with fewer side effects. I felt that all of my patients taking the older drug would agree with this goal and the protocol”.

No

Trial 24

NCT02141672

No

No

No

  1. aNo mention of PPI in study publication—information obtained from the author when requesting the protocol