Registration and Consent Questionnaire (I)

INSTRUCTIONS 

You are or your child / dependent is eligible for registration with the International Dysferlinopathy Registry and have decided to join this Registry. We thank you for your participation. By filling out this Registration and Consent Questionnaire (I), you will allow the Registry to create a user account for you or your child / dependent. Your account will be used to protect your identity and information. It will allow you to view and update / modify your information and to view your questionnaires.

Please fill out the registration form below.

All questions are mandatory, except otherwise specified.
Once you press the SUBMIT button, any field that is not correctly filled in will be marked in red and correctly filled in sections will be automatically collapsed (please use the buttons on the right of each section to expand or collapse it).
After successful submission, please follow the directions provided in the confirmation e-mail that will be sent to the e-mail address you provided.

If you are a parent / guardian of several children/dependents diagnosed with a dysferlinopathy, you will need to fill out this form separately for each participant.


1. PATIENT'S INFORMATION 

1.1 First / Given name
1.2 Last / Family name
1.3 Postal address
1.4 City
1.5 State / Province (optional)
1.6 Postal / Zip code (optional)
1.7 Country
1.8 Phone number (optional)
1.9 E-mail address
  (If the patient is a child / dependent, who doesn't have an email address please list the parent / guardian email address above)
1.10 Date of birth  Day:   Month:   Year: 
1.11 Gender  Male     Female
1.12 We aim to harmonise existing dysferlinopathy registries. Therefore, we would like to know if you have signed up with other registries:
 

Please specify which registry (other than the Jain Foundation Registry): 


2. PARENT’S OR GUARDIAN’S INFORMATION 

If you are a patient and are 18 years of age or older, skip this question and proceed directly to section 3.

If you are filling in this questionnaire on behalf of the patient, please give your details in this section and explain your relationship to the patient.

If you are the patient, but are younger than 18 years of age, please have your parent / guardian fill in this section.

 Mr     Ms
2.1 First / Given name
2.2 Last / Family name
2.3 Postal address
2.4 City
2.5 State / Province (optional)
2.6 Postal / Zip code (optional)
2.7 Country
2.8 Phone number (optional)
2.9 E-mail address
2.10 The patient is

3. PHYSICIAN / MEDICAL CENTRE INFORMATION 

Please provide us with contact information for a medical doctor / medical centre who will have information about your muscle problem diagnosis and symptoms.

Below is a list of physicians, medical centres and organisations to choose from. Once you select a choice, the fields in the table below will be automatically filled in with the information stored in this Registry for this medical doctor / medical centre.

List of medical doctor(s) / medical centre(s): 

If you don’t find your medical doctor / medical centre in the above list, then enter the necessary information in the empty table below. Please select the type of your contact from the pull down menu (physician, neurologist, etc), enter the name of your contact person or medical centre, then enter at least one form of contact information: complete postal address or e-mail address. The Registry will use this information to contact your medical doctor / medical centre.

Please select an option:
3.1 Name of your contact person
3.2 Name of medical centre / hospital
3.3 Postal address
3.4 City
3.5 State / Province (optional)
3.6 Postal / Zip code (optional)
3.7 Country
3.8 Phone number (optional)
3.9 E-mail address

Note: once your account is created, you will be able to add more medical doctors / medical centres to your list, if necessary.


4. AUTHORISATIONS  

4.1 I give the International Dysferlinopathy Registry my permission to:
a) contact the doctor(s) / medical institution(s) that I indicated in section 3 of this questionnaire in order to obtain the genetic and other medical information on my dysferlinopathy that are requested by this registry;
b) store all my contact details and medical data – that have been provided by me or by the doctor(s) / medical institution(s) I listed – in this registry, where they may be used for research and for the planning of clinical trials and/or research studies;
c) store all my anonymous medical data in the UMD-DYSF mutation database and make readily consultable a part of these data on the UMD-DYSF web portal (see point 7 in the Information for Patients document);
d) send me a follow-up e-mail / letter / form once a year asking me to register any changes in my medical condition and personal details in order to keep the registry up-to-date.
     Yes
     No, I do not wish to join the International Dysferlinopathy Registry
 
4.2 If there are any major changes in my data that occur in the period between the yearly updates (for example change of address, participation to another registry / scientific research study / clinical trial or identification of new genetic data), I am willing to inform the International Dysferlinopathy Registry.
     Yes
     No
 
4.3 I allow the International Dysferlinopathy Registry to send me information on dysferlinopathies that might be relevant to me, including information about any clinical trials or research studies in dysferlinopathies that I might be eligible for.
     Yes
     No
 
4.4 I allow the International Dysferlinopathy Registry to share my data with the Jain Foundation, and by agreeing to share my data I understand that I will automatically be registered with the Jain Foundation, that I will have access to all the services the Jain Foundation offers and that I may directly be contacted by the Jain Foundation.
    Yes (I AM NOT already registered with the Jain Foundation Registry)
    Yes (I AM already registered with the Jain Foundation Registry and I agree to share all my registry information between the two registries).
    No

5. CONSENT 

Please choose the one that applies:

5.1 I am the patient, I am 18 years of age or older and able to consent by myself.
The nature of the International Dysferlinopathy Registry has been fully explained to me. I have understood the Information for Patients document. I have had the opportunity to ask questions, and all of my questions have been answered to my satisfaction. Upon reflection, I agree to participate in this registry.
 
5.2 The patient is under 18 years of age or is otherwise unable to consent by himself / herself, and I am his / her parent / guardian.
I am the patient’s parent / guardian and the nature of the International Dysferlinopathy Registry has been fully explained to me. I have understood the Information for Patients document. I have had the opportunity to ask questions, and all of my questions have been answered to my satisfaction. Upon reflection, I agree to allow my child / dependent to participate in this registry.
  (OPTIONAL): I am the patient and I have understood the Information for Patients or Children document and discussed this information with my parent / guardian. I agree to her /him entering my data in the International Dysferlinopathy Registry and to giving authorisations and consent on my behalf.

If you have correctly filled in all mandatory information, you can submit your questionnaire now.

After you submit, please remember that mandatory fields that are not (correctly) filled in will be underlined: please correct/complete all mandatory fields before submitting again.


If you experience problems for submitting your questionnaire, you can contact us.