cureCADASIL ASSOCIATION © 2012-2016

CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

CureCADASIL/CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

Please join the NEW cureCADASIL Family Registry!

Ready to join?

We have partnered with Patient Crossroads CONNECT program as a secure way to share de-identified (anonymous) health information and to gain a better understanding of how CADASIL affects other patients and families.

 

Registered individuals have the opportunity to participate in research surveys, to access data summaries of other registry participants, and to elect to receive information about opportunities to participate in future research studies.

 

So share your data.

 

Help collect data among individuals and family members worldwide affected by CADASIL. Help develop an evidence base of data for future research. Help us become a stronger community that deserves to be “found” by a pharmaceutiucal company looking for their next drug for a rare disease. Help find a treatment for you and your loved one. Help Envision the cure, Embrace the challenge!

Help us reach our goal of 100 individuals in 100 days!

Frequently Asked Questions

*No cost to join

*Individuals (i.e., you!) own all of your data. All data are de-identified (anonymous) and personal  identifying information is only seen by Patient Crossroads trained staff

*Individuals can request to share (or not share) contact details (name and email address) with interested researchers for future studies.

 

Who is eligible to join?

*Positive CADASIL diagnosis (either via genetic diagnosis or other diagnosis)

*Family history of CADASIL (i.e. at risk of CADASIL but undiagnosed)

                                                                                                                               

Caregivers can also fill out information for family members if they are responsible for their medical care.

*If caregivers provide information for children <18, children will be contacted when they turn age 18 to confirm if they would like to continue to participate

*Information can also be included for deceased family members, although this is encouraged only for those with a confirmed diagnosis.

 

What information will be asked in the survey?

*The General Global Survey used across all CONNECT registries collects information on 4 components: diagnosis, family health history, medical care, and general health. You can choose your sharing preferences for each survey and whether you want to share your de-identified (anonymous) data and contact information.

*As an option you can also upload a copy of your medical records, invite family members to join the registry, add dependents (i.e. children or parents for which you are providing care), and add names of your healthcare providers.

*You will also be asked to provide feedback on the usability of registry and how long it took you to complete the survey.

*The purpose of the CONNECT registry is to collect and analyze data across patients with CADASIL, but also across other diseases to fuel research and find commonalities across diseases. So not all of the questions in the survey may seem relevant or accurately worded for CADASIL. We are developing an additional survey that will supplement the General Global Survey to provide further clarification on certain questions.

 

How long will it take to complete?

*Survey(s) can be completed at your own pace i.e., can be started and saved and completed later. Each survey can be completed in about 20 minutes.

 

My family just heard about the registry and we all want to join. Should we all join?

*Yes! You should all join. However, ideally one person will join the registry first and then invite family members using the “Invite Others” function in the registry. This is under the Profile Tab, Invitations, Invite Others button. Using this link and the unique Family Code that is generated is currently the only way family members’ de-identified data will be linked in the registry, which will provide critical individual- and family-level data...the building blocks for our FAMILY registry!

** No information is shared between family members, and the accounts are not linked; each person’s data remains de-identified and confidential but the code assigned to each participant will indicate how family members are related, providing valuable data to researchers.

 

I have joined the registry, but no other members of my family are diagnosed with CADASIL. Should they still join?

*Yes, we encourage all people at risk of CADASIL, even if they are not yet diagnosed or have chosen not to be diagnosed, to join the registry. Similar to the design of clinical trials for Huntington’s Disease, future CADASIL studies may enroll individuals who are not yet diagnosed (and pay for participants to get tested) or may enroll family members who are willing to being monitored medically but prefer not to know their diagnosis status.

*Because CADASIL is a rare disease, every person counts! We need everyone to join the registry to help our disease get noticed.

 

Won’t it skew the results to have some people with CADASIL and others who are undiagnosed and unsure if they have CADASIL completing the surveys?

*No. When you see the results of each of the 4 surveys, they will be reported separately for people with a confirmed diagnosed and people not yet confirmed.

 

Ooops! My family members and I each joined the registry and forgot to use the Invite Others function. What should we do now?

*Thank you for joining! Our #1 goal is to enroll people with CADASIL or at risk of CADASIL in the registry. Our #2 goal is to make sure family members are linked so that we not only have good data for individuals, but we also have good data for CADASIL families. The difference is that different researchers are interested in different questions, and family linkage studies are common and very useful in genetic diseases like CADASIL.

*Currently the best way to properly link accounts is to email registry@cadasilassociation.org that you would like to delete your account. We will work with Patient Crossroads to have the account deleted. Then have your family member “invite” you to join using the “Invite Others” function in the registry. This is under the Profile Tab, Invitations, Invite Others button.

*We are currently working with Patient Crossroads to see if there is an alternative process to properly link family members’ accounts after they have been created.

 

Can I update my information or my family member’s information the future?

Yes! Data are most useful when they are up-to-date, so data can be updated at any time.

    * Patient Crossroads will send out an annual reminder to update your data.

    * Patient Crossroads may reach out to participants occasionally to fax/upload relevant test results

    *If affected family members pass away, this can be denoted in the registry.

 

Question: Can I create an account for a deceased family member? Why is this useful?

*Yes. As the legal caregiver of a living or deceased family member, you can join the registry on their behalf. You will simply be the account holder and will enter information for your family member. Because CADASIL is a rare disease, every person is very important, and we encourage you to create an account for deceased family members.  

Below are our recommendations on the best way to go about doing this depending on your personal family situation:

a) For caregivers who do not have a CADASIL diagnosis or risk of CADASIL (e.g., spouse), you should create an account for the deceased participant (the caregiver will be the account owner)

b) For caregivers who also have a CADASIL diagnosis or risk of CADASIL (e.g., child or other descendent), you should create an account for yourself and then list the deceased participant as one of your dependents in the Family Members section.

 

If you fall under Option a, please join the registry using the following steps:

On the website,  click "Create Account". As the account holder, enter your name and relationship to the registry participant (currently "Child" is not an option and we are working with Patient Crossroads to get this added). After you click submit, you will enter the name and information for the registry participant. You can simply leave the "Family Code" field blank (it will be automatically created). The fields on where the participant lives should be filled out as their last residence. Once the form is completed, click "Update".

 

If you fall under Option b, please join the registry using the following steps:

In your account, under "Profile", "Family Members" click "Add". Enter the new registry participant's name and your relationship to the registry participant (i.e., your family member) and click "Submit".

 

After you complete this form, you will be asked to complete the survey(s) for this family member. Some of the answers are completed for you based on the information from the first person registered in your family.

 

Completing the survey

Once the account is created for your family member, you will automatically start on the "Diagnosis" survey. You can complete this survey, but it may be more intuitive to first start on the "General Health" survey because the first question in the "General Health" survey asks whether the participant is deceased. To switch to the "General Health" survey, click on "Profile" at the top of the web page. You will see a list of the 4 surveys on the left side of the Profile page. Click on the "General Health" survey.

The first page of the "General Health" survey asks whether the participant is deceased and some other general questions. After you complete these questions and click "Next", the next screen in the survey includes 4 questions regarding the participant's death. After you complete these questions and click "Next", the rest of the survey will ask questions about the participant's general health when he/she was living. We recommend that you fill out these survey questions based on the participant's last year of life

You can complete all 4 surveys at your own pace. Not all need to be completed at the same time. Once you have completed all 4 surveys, remember to consider uploading the registry participant's medical records documenting their diagnosis (either via genetic test results or other diagnosis). This is very helpful information. Also, if applicable, please consider inviting other family members directly related to the registry participant. To do this, it is critical to use  the "Invite Others" function in the registry (which sends an automated email) so that the other family members' accounts are properly linked showing how they are related to each other.  

 

Other questions?

Contact us and send your questions or ideas for how to improve the family registry to registry@cadasilassociation.org