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Autosomal Dominant Polycystic Kidney Disease Impact Scale (ADPKD-IS)

Otsuka Pharmaceutical Development & Commercialization, Inc (USA)

Distributed by Mapi Research Trust

Distributed by Mapi Research Trust

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Basic description

Developed in 2013

Authors

Otsuka Pharmaceutical Development & Commercialization, Inc (USA)

Copyright
ADPKD-IS © Otsuka Pharmaceutical Development & Commercialization, Inc. 2013, All Rights Reserved.
Objective
To measure the impact of ADPKD on patients’ lives
Therapeutic area
  • Female Urogenital Diseases and Pregnancy Complications
  • Male Urogenital Diseases
Therapeutic indication

Polycystic Kidney, Autosomal Dominant

Type of Clinical Outcome Assessment (COA)
  • PRO PRO
Original language(s)
  • English for the USA
Bibliographic reference(s) of the original questionnaire

Cole J, Cheng R, Oberdhan D, Krasa H, Hays RD. Psychometric analyses of patient-reported outcome instruments for Autosomal Dominant Polycystic Kidney Disease. Value in Health. 2015 May;16(3):A183 (Poster Abstract)

Oberdhan D, Krasa H, Schaefer C, Cole J. Health-Related Quality Of Life (HRQoL) Measures In Autosomal Dominant Polycystic Kidney Disease (ADPKD). Value in Health. 2015;18(7). (Abstract)


Contact and conditions of use

Authors

Otsuka Pharmaceutical Development & Commercialization, Inc (USA)

Otsuka Pharmaceutical Development & Commercialization, Inc.
2440 Research Boulevard
Rockville, MD 20850
USA
Phone: +1-240-683-3517 |
Fax: +1-301-721-7517 |

Contact person:
Dorothee Oberdhan, MS
Senior Manager, HEOR and Outcomes Management
E-mail: dorothee.oberdhan@otsuka-us.com

Contact information

Mapi Research Trust
PROVIDE™
27 rue de la Villette
69003 Lyon
France
Phone: +33 (0)4 72 13 66 66

Conditions of use

Non-Commercial Users

If you do not receive specific funding for your study, you may download the questionnaire directly:

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  2. Click the 'Online distribution' tab in the left menu bar and follow the instructions

Tutorials are available on our FAQs.

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  4. Our PROVIDE team will get back to you with the needed information in a timely manner

Access fees

ROYALTY FEES* Commercial users Cost per study 10 000 €
Cost per language 550 €
Funded academic research Cost per study Free
Cost per language Free
Not funded academic users Cost per study Free
Cost per language Free
DISTRIBUTION FEES* Commercial users Cost per study 1 000 €
Cost per language 500 €
Funded academic research Cost per study 300 €
Cost per language 50 €
Not funded academic users Cost per study Free
Cost per language Free

* 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 questionnaireMapi 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)

Review copy

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.

Online distribution

For Non-Funded Academic Studies

The following licensing process is restricted to academic users:

  • Who do not receive specific funding for their study
  • Who intend to use the questionnaire in individual clinical practice or research study

Should you not correspond to this category of users, please send us a request.

Note: This site aims at providing you with the original version and existing translations of the questionnaire. However some modules/versions may not be downloadable in the language you need.

If you are interested in specific language(s), please first consult the list of existing translations in PROQOLID.

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Languages

Original language(s)

  • English for the USA

Translations

The translations listed 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.

ADPKD-IS

Chinese for China (Simplified)
Chinese for Taiwan
Czech for Czech Republic
Dutch for Belgium (Flemish)
Dutch for the Netherlands
English for Australia
English for the UK
French for Belgium
French for Canada
French for France
French for Switzerland
German for Germany
German for Switzerland
Hungarian for Hungary
Italian for Italy
Italian for Switzerland
Japanese for Japan
Korean for Korea
Polish for Poland
Portuguese for Brazil
Romanian for Romania
Russian for Russia
Spanish for Argentina
Spanish for Spain
Spanish for the USA
Turkish for Turkey

The author has selected Mapi as exclusive linguistic validation company to ensure the production of harmonized and consistent language versions.

For additional information on available translations of this instrument, or for a project involving new languages, please submit a request (tutorials available on our FAQs).

Conditions to translate

Commercial Users

Exclusive vendor for translation work for commercial users: Mapi

Academic Translation

If you wish to translate the questionnaire:

  1. Log in or Register for free
  2. Submit your request for translation online (Tutorials are available on our FAQs)
  3. Our PROVIDE team will send you a translation agreement along with Linguistic Validation Guidelines.

E-versions

Conditions to implement in electronic applications

Please refer to the "Contact and conditions of use" tab

Last update: May 2017
For additional information, please submit a request. More information in our FAQs.