Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale (ADPKD-PDS)

Developed in 2013 - version 6 currently available

A separate instrument for use in adolescent subjects is under development

Cole JC, Krasa HB, Cheng R, et al. The Impact of Autosomal Dominant Polycystic Kidney Disease (ADPKD) on Patients' Health-Related Quality of Life (HRQoL): Developed of a Conceptual Framework. In: 16th International Society of Pharmacoeconomics and Outcomes Research (ISPOR); May 21-25, 2011; Baltimore, USA. Value in Health. 2011 May;14(3):A77 (Poster Abstract)

Cole JC, Oberdhan D, Cheng R, et al. Patient-Experienced Impact from Autosomal Dominant Polycystic Kidney Disease (ADPKD): Summary of Burden Noted in North American, European, and Japanese Focus Groups. In: 48th European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Congress; June 23-26, 2011; Prague (Poster Abstract)

Oberdhan D, Chapman AB, Davison SN, et al. Patient-reported Pain in Autosomal Dominant Polycystic Kidney Disease (ADPKD): Initial Concepts Based on Patient Focus Group Discussions. American Society of Nephrology - Kidney Week. 2013;SA-PO283:692A (Poster Abstract)

Cheng R, Oberdhan D, Krasa H, Cole JC. Patient-reported Pain in Autosomal Dominant Polycystic Kidney Disease (ADPKD): Concept Stability Between Europe and United States (US) Focus Groups. ISOQOL 2013. Poster.

Palsgrove AC, Guay-Woodford LM, Cheng R, et al. Burden of Autosomal Dominant Polycystic Kidney Disease (ADPKD): Effects on the Daily Lives of Patients and Their Caregivers. American Journal of Kidney Diseases. 2014 May;63(5):B86 (Poster Abstract)

Oberdhan D, Palsgrove A, Cole J, Blais J, Cheng R. Patient Experience with Pain Related to Autosomal Dominant Polycystic Kidney Disease (ADPKD). World Congress of Nephrology, 2015

• ADPKD-PDS User Agreement

* Excluding VAT
Commercial users: Industry, CRO, any for-profit companies
Funded Academic research: Projects receiving funding from commerce, government, EU or registered charity. Funded academic research– sponsored by industry fits the “commercial users” category.
Not funded academic users, individual medical practice: Projects are not explicitly funded, but funding comes from overall departmental funds or from the University or individual funds

Conditions to translate

Please refer to the "Languages" tab

Conditions to implement in electronic applications

Exclusive licensor for e-versions of the questionnaire: Mapi Research Trust

Academic and Commercial Users

• Shall follow the “Conditions of use”  mentioned above
• In addition, in case the electronic version of the questionnaire is developed by a third party (IT Company, e-PRO vendor…), User shall check with Mapi Research Trust that this third party has signed the necessary License Agreement with Mapi Research Trust before developing the electronic version of the Questionnaire.

Information Technology (IT) Companies (incl. ePRO vendors)

• In case of a one-shot development and commercial use of an electronic version of the questionnaire by the IT Company, the IT Company shall:
  • Sign a “Specific-Study License Agreement with IT Company” with Mapi Research Trust
    • authorizing the electronic implementation of the questionnaire for the specific study only
    • shall not permit the IT Company to promote the electronic version of the questionnaire or its use for another study or another client
  • Pay a one-shot license fee per study to Mapi Research Trust: 500 Euros
• In case of an IT Company who wishes to develop an electronic version of the questionnaire and would like to obtain a non-exclusive license to market and promote their devices / tablets / smartphones / e-applications using the questionnaire, the IT Company shall:
  • Sign a “General License Agreement with IT Company” with Mapi Research Trust
    • authorizing the electronic implementation of the questionnaire on multiple devices for multiple studies and clients
    • permitting the IT Company to promote the electronic versions of the questionnaire by any marketing means (including, but not limited to, IT Company’s  promotional documents / websites / press release / communication during conferences / webinars)
  • Pay an annual administrative fee of 2,500 Euros to Mapi Research Trust
  • Pay an annual royalty fee of 2,500 Euros to the author(s)

Examination copies can only be used for the limited purpose of examining the suitability of the Questionnaire for subsequent research and/or clinical use, and cannot be used in research or in clinical practice or distributed to others.
You are not authorized to modify, retype, translate, copy or otherwise duplicate the Questionnaire except with the further and prior written permission of Mapi Research Trust / the developers / copyright holders / distributors.

• ADPKD-PDS in English for the USA

The listed translations may not have undergone a full linguistic validation process and may require further work to be suitable for use in a study. This list is subject to constant changes, therefore please check the status of translations with Mapi Research Trust / the developers / copyright holders / distributors.

My study is not funded

• I am a non-commercial user
• I do not receive specific funding for my study
• I intend to use the questionnaire in individual clinical practice or research study