Caution: JavaScript execution is disabled in your browser. You may not be able to answer all questions in this survey. Please, verify your browser parameters.
Help us to improve the online emergency letter and our website www.emergencyprotocol.net!
Do you (or does a family member) have a liver glycogen storage disease (GSD) or fatty acid oxidation disorder (FAOD)? Or are you a professional who is interested in online generation of emergency letters? We need your help in understanding how the emergency letters and the website serves your needs.
This questionnaire will take 10 minutes of your time and your feedback is of tremendous value to us. If possible, we kindly ask that patients over 12 years of age complete this questionnaire at least together with the parent or carer. If the patient is 12 years of age or younger, we kindly ask the parent or carer to complete the survey. In the event that there are several GSD/FAOD patients per family, we kindly ask you to complete the questionnaire for each patient. Your answers will be stored and analyzed anonymously.
For more information, please send an email to info@stofwisselingsziekten.nl or visit our website.
A note on privacyThis survey is anonymous.The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it. If you used an identifying token to access this survey, please rest assured that this token will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification tokens with survey responses.
Please choose Please choose... GSD type 0 GSD type Ia GSD type Ib GSD type IIIa GSD type IIIb GSD type IV GSD type VI GSD type IX GSD type XI/Fanconi-Bickel syndrome MCADD MADD VLCADD LCHADD/MTP Carnitine transporter deficiency (OCTN2) CPT1 CPT2 CACT Idiopathic ketotic hypoglycemia Unclassified/Unknown deficiency I do not want to share this information Other (please specify)
For patients (older childeren and adults): What is your age in years? For parents/relatives/carers: How old is your child in years?
Please choose Please choose... Afghanistan Albania Algeria Andorra Angola Antigua and Barbuda Argentina Armenia Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bhutan Bolivia (Plurinational State of) Bosnia and Herzegovina Botswana Brazil Brunei Darussalam Bulgaria Burkina Faso Burundi Cabo Verde Cambodia Cameroon Canada Central African Republic Chad Chile China Colombia Comoros Congo Costa Rica Côte D'Ivoire Croatia Cuba Cyprus Czech Republic Democratic People's Republic of Korea Democratic Republic of the Congo Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Faroe Islands Fiji Finland France Gabon Gambia Georgia Germany Ghana Greece Grenada Guatemala Guinea Guinea Bissau Guyana Haiti Holy See Honduras Hungary Iceland India Indonesia Iran (Islamic Republic of) Iraq Ireland Israel Italy Jamaica Japan Jordan Kazakhstan Kenya Kiribati Kuwait Kyrgyzstan Lao People’s Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Mauritania Mauritius Mexico Micronesia (Federated States of) Monaco Mongolia Montenegro Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Zealand Nicaragua Niger Nigeria Norway Oman Pakistan Palau Panama Papua New Guinea Paraguay Peru Philippines Poland Portugal Qatar Republic of Korea Republic of Moldova Romania Russian Federation Rwanda Saint Kitts and Nevis Saint Lucia Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Sudan Spain Sri Lanka State of Palestine Sudan Suriname Swaziland Sweden Switzerland Syrian Arab Republic Tajikistan Thailand The former Yugoslav Republic of Macedonia Timor-Leste Togo Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Tuvalu Uganda Ukraine United Arab Emirates United Kingdom of Great Britain and Northern Ireland United Republic of Tanzania United States of America Uruguay Uzbekistan Vanuatu Venezuela (Bolivarian Republic of) Vietnam Yemen Zambia Zimbabwe I do not want to share this information Other
For patients (older childeren and adults): How many times have you been hospitalized the past year? For parents/relatives/carers: How many times was the patient hospitalized the past year?
Please choose Please choose... I do not want to share this information I do not know 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 >20
Please choose Please choose... I do not know 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 >20
Your answer
Do you recommend www.emergencyprotocol.net to generate emergency letters to your patients?
The next couple of questions are about the use of the emergency letter and the website www.emergencyprotocol.net. On this page we first ask you to give us strong elements. On the next page we ask for points of improvement.
Please rate our website www.emergencyprotocol.net.