Phenylketonuria impact and treatment Quality Of Life Questionnaire (PKU-QOL)


Distributed by Mapi Research Trust

Distributed by Mapi Research Trust

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Basic description

The PKU-QOL, developed in 2015, is available in four versions: Child PKU-QOL, Adolescent PKU-QOL, Adult PKU-QOL and Parent PKU-QOL

A software called « PKU-QoL© Electronic scorer » is available to ease the calculation of PKU-QoL scores for all four versions. This software and QuickStart guide can be downloaded from the following link: Download PKU-QOL© Electronic scorer files



PKU-QOL © Biomarin Pharmaceutical Inc. – 2015 – All Rights Reserved
Developed for patients with phenylketonuria (PKU) and their parents to cover the physical, emotional, and social impacts of PKU and its treatment on patients’ lives
Therapeutic area
  • Nervous System Diseases
  • Nutritional and Metabolic Diseases
  • Congenital, Hereditary, and Neonatal Diseases and Abnormalities
Therapeutic indication


Type of Clinical Outcome Assessment (COA)
  • ObsRO ObsRO
Original language(s)
  • Dutch for the Netherlands
  • English for the UK
  • French for France
  • German for Germany
  • Italian for Italy
  • Spanish for Spain
Simultaneously developed in six languages
Bibliographic reference(s) of the original questionnaire
Regnault A, Burlina A, Cunningham A, et al. Development and psychometric validation of measures to assess the impact of phenylketonuria and its dietary treatment on patients’ and parents’ quality of life: the phenylketonuria – quality of life (PKU-QOL) questionnaires. Orphanet J Rare Dis. 2015 May 10;10(1):59 (Full Text Article)

Contact and conditions of use



Contact information

Mapi Research Trust
27 rue de la Villette
69003 Lyon
Telephone: +33 (0)4 72 13 65 75

Conditions of use

Non-Funded Academic Users

Please consult the online distribution tab below for our automated licensing and distribution process.

Other Users

  1. All requests have to be submitted through our online request management (Tutorials are available on our FAQs)
  2. In order to accelerate the process, you may attach the completed User Agreement (link below) to your online request
  3. Send the user agreement signed hard copy by regular mail to Mapi Research Trust, as we need it for our records
  4. Our PROVIDE team will get back to you with the needed information in a timely manner

Access fees

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

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.

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.


To access this section, please complete a client account.


Original language(s)

  • Dutch for the Netherlands
  • English for the UK
  • French for France
  • German for Germany
  • Italian for Italy
  • Spanish for Spain
Simultaneously developed in six languages


The list of 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.

PKU-QOL - Adolescent

English for the USA*
Turkish for Turkey*

PKU-QOL - Adult

English for the USA*
Turkish for Turkey*

PKU-QOL - Child

English for the USA*
Turkish for Turkey*

PKU-QOL - Parent

English for the USA*
Turkish for Turkey*
* Performed by Mapi

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

Academic Translation

Please submit a request to sign a translation agreement and to obtain Linguistic Validation Guidelines. To submit a request, please consult our FAQs.

Commercial Users

Exclusive vendor for translation work for commercial users: Mapi

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