Invitation to complete Pain Questionnaire Prader-Willi syndrome

Invitation to complete Pain Questionnaire Prader-Willi syndrome 

Research title: Pain in Williams, Prader-Willi, and Fragile X syndromes 

Amsterdam, 13 april 2017 

Dear Sir / Madam, 

Researchers at the VU University examine pain characteristics (the presence of painful conditions, pain perception, pain behaviour, and the ability to feel physical sensations) of people with Williams syndrome, Prader-Willi syndrome, and Fragile X syndrome. In this study, participants are tested, file information is requested, and questionnaires are completed. 

We distribute the Pain Questionnaire in various Dutch and English countries. The purpose of the questionnaire is to gather experiences and knowledge about pain from people directly involved in adults with Williams, Prader-Willi, and Fragile X syndromes (such as family and Personal Support Workers). Sharing this information provides valuable insight and practical tools for dealing with pain. The person completing the questionnaire does not participate in the rest of the study. 

The questionnaire will be completed online. Data will be collected anonymously. In other words, no personal information such as name and date of birth will be required. 

The reason that we approach you is the request to complete the Pain Questionnaire. This will take on average 30 minutes and is best completed within one single session. The link will expire after one month. 

Click on the blue text to go to the questionnaire: 

Pain in Prader-Willi Syndrome Questionnaire 

(If the link does not work, then please copy and paste the following link in the address field of your browser: http://fppvu.eu.qualtrics.com/jfe/form/SV_5injWlpKR0pRcG1) 

Thank you for your cooperation! 

Sincerely, researcher Nanda de Knegt 

Contact researcher: 

Dr. N.C. (Nanda), the Knegt 

Psychologist and researcher of Clinical Neuropsychology 

VU University 

Phone: 020-5980708 

E-mail: nc.de.knegt@vu.nl 

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