The Registry is getting new updated features and will be CLOSED until October 20, 2019. Thank you
FND SCIENTIFIC RESEARCH REGISTRY- Closed until October 20, 2019
FOR THE FIRST TIME IN HISTORY, PATIENTS CAN DIRECTLY IMPACT RESEARCH WITH SCIENTIFIC DATA.
FND Hope has teamed up with the Genetic Alliance to create the world’s first scientific registry for functional neurological disorders (FND). The purpose of the Scientific Registry is to create a platform for patients with FND to engage and contribute to medical research about the condition and its clinic care, causes, diagnosis, and treatment. Patient participation is vital to research. By engaging patients, disease advocacy organizations, providers and researchers with this platform, it is expected that clinical research will be accelerated, increase the understanding of the condition and supporting the development of more effective treatments. By aggregating patients and their health information in a centralized platform, researchers will be able to find more suitable study participants, enhancing the confidence and validity of their findings.
FND Hope and the Genetic Alliance protects your data according to your comfort level.
You can choose various ways to set up your sharing or privacy settings.
You decide who can, can’t, or must ask first before seeing your health information.
Once you complete the survey by answering questions, you are enrolled into the registry.
Frequently Asked Questions
Why should I participate in the patient registry?
It is the first and only campaign of its kind that allows our community to connect directly to researchers, so we can work together to find better treatment and to learn more about FND.
Who has access to my health information?
Only those you allow to have access will see your data.
Who can take part?
Anyone with a current diagnosis of functional neurological disorder (FND) as diagnosed by a medical doctor can take part. FND diagnoses include:
- Functional Neurological Disorder (FND)
- Functional Neurological Symptoms Disorder
- Functional Movement Disorder (FMD)
- Conversion Disorder (CD)
- Psychogenic Movement Disorder
- Movement Disorder
- Somatoform Disorder
- Non‐Epileptic Seizures
- Psychogenic Non‐Epileptic Seizures (PNES)
- Non‐Epileptic Attack Disorder (NEAD)
- Dissociative Seizures
- Dissociative Disorder
- Functional Weakness Disorder
- Functional Dystonia
- Currently, the registry is only available in English; to take part you must speak and write in English.
What happens in this study?
With this study, patients enrolling in the scientific registry will self‑report (or report on behalf of a child) answers to survey questions online at a time and place that is convenient for them. It is expected the survey may take less than 1 hour to complete. The survey aims to collect baseline information about patient’s diagnosis, age at onset, symptoms, physical functioning, treatment protocols, and impact on life. It is recommended you may want to take this survey at at time you have sufficient energy and when you won’t be interrupted.
What are the risks?
In general this is a low risk study, consisting of surveys alone. However, we will ask you questions about your mood, functioning, and emotional stressors, including trauma, both current and past. This can sometimes make people aware of how low or anxious their mood is or trigger memories of emotional stress. We suggest that if you notice that your mood seems low or anxious or you feel very stressed, then you should seek support from family members or seek appropriate medical care if necessary.
What are the benefits?
There are unlikely to be immediate direct benefits for you. However, the study does open up new lines of inquiry in understanding FND, which will contribute to medical research about the condition and its clinic care, causes, diagnosis, and treatment.
Who is running this registry?
FND Hope has partnered with the Genetic Alliance to use their PEER platform, which also hosts registries for more than 30 other medical conditions and offers the ability to do cross-condition research. This scientific registry will serve as a base for researchers from around the world to identify patients for their particular studies.
The Initial and Follow Up surveys have received ethical approval from the Genetic Alliance Institutional Review Board
What will happen with the information I give on these questionnaires?
By utilizing the PEER system, registry participants have control over how their clinical and personal information is discovered, accessed and shared. The default settings for the registry are that FND Hope, FND Hope-recommended researchers, and all other researchers may access de-identified information. Only FND Hope and FND Hope-recommended researchers may contact you. You may change these settings to allow access to your data as you prefer.
What if - once I have started - I decide that I no longer want to participate?
Your participation is completely voluntary – so you can exit the study any time you like, and for any reason. However, we will keep the responses you have given up us to this point. Also, once the survey is completed you will not be able to withdraw your responses.
I am having a technical error. Help!
- Be sure you are registering on a computer and not a mobile phone or tablet. This Scientific Registry was designed to be completed on a computer and is not compatible with mobile phones/tablets.
- Are you stuck on the survey introduction page and can’t see how to advance? The survey loads new questions from the top of the screen instead of the bottom. Be sure you have scrolled up to the top of the page, where you should find the next question.
- Still have an issue? Please submit your issues to the Genetic Alliance via Give Feedback
What if my health date changes?
If your health changes or your sharing preferences change, then, so can your data.
Can I change my sharing preferences?
You can change any of your settings at any time.
FND Advance Research
HELP MOVE RESEARCH FORWARD
Research for professionals.
FND Hope is here to make your research project easier, showing you how to partner with the FND Scientific Registry Research and how to submit a research proposal. For more Info Click Here.
Research for patients.
FND Hope has teamed up with the Genetic Alliance, an accredited medical data base collector, to create the first of its kind FND patient data bank. Researchers with IRB approval may apply to access the FND patient registry. Participants will have control over the content they provide in their patient portal. Help researchers help you and consider if taking part in a clinical trial is right for you. For more Info Click Here