Frequently Asked Questions

What is the cost of using HDQLIFE?

It is free to use HDQLIFE, but please include a citation for any HDQLIFE measures used in a publication. You can find the citation information here.

Does HDQLIFE need to be licensed?

No, it does not need to be licensed.

Who should complete the HDQLIFE measures?

The HDQLIFE measures should only be completed by persons with Huntington disease. They should be completed without assistance from anyone else (like a caregiver, care provider, etc.). There are no data for using the HDQLIFE measures as a proxy assessment.

Can I modify the HDQLIFE items?

No modifications should be made to the text and responses of the HDQLIFE items. The text and responses of HDQLIFE items cannot be altered in any way and still be considered an HDQLIFE item. If users modify the items, they cannot refer to these modified items as HDQLIFE. There are no data to determine whether or not a modified version would have the same psychometric properties as the original HDQLIFE item.

Can HDQLIFE be administered electronically?

Yes, the short forms can be built and used in your electronic format. At this time, the computer adaptive tests can only be administered through REDCap or the Assessment Center API. As described above, no modifications should be made to the text and responses of the HDQLIFE items.

If the items are administered electronically in our own system, do you need to review the form build?

No, we do not need to review the form build.

Can HDQLIFE be administered on paper?

Yes. You can administer the items on paper, using the pdfs we’ve created here or your own. As discussed above, no modifications should be made to the text and responses of the items.

What is the original source of language of the assessment?

English (USA)

Are there available certified translations?

There are no certified translations of the HDQLIFE measures at this time.

Can we translate the measures?

If you wish to translate the HDQLIFE measures, you need to follow the requirements by for translation.

Is there an administration manual/user guide available?

Yes, there are user manuals here and on . Scoring guidelines are in the user manuals.

Where can I get a copy of the measures?

The measures are available for download here and

Is there training available/required?

There is no training available/required but you can contact the developers ([email protected]) if you have any questions.