FND Hope is the leading patient advocacy group for FND and draws its patient population and professional collaborators from around the globe. FND Hope is expanding its research by building upon the first FND registry hosted with the Genetic Alliance. It is expected that this new FND registry will enhance the ability of FND Hope and researchers to better understand FND and find significant correlations and trends in FND by aggregating patients in a centralized platform. The survey aims to collect baseline information about a patient’s diagnosis, age at onset, symptoms, physical functioning, treatment protocols, and impact on life. We hope that this will serve as the foundation on which to identify more effective treatments for patients.
FND Hope is re-launching its FND Registry for Research, an international online registry for patient reported outcomes in individuals impacted by Functional Neurological Disorder (FND). in collaboration with the Genetic Alliance and Aretetic Solutions. This builds on the first patient registry hosted with the Genetic Alliance on an earlier platform. The FND Registry for Research is for individuals impacted by (FND).
The aim of the FND Registry is for individuals diagnosed with FND to engage and contribute to medical research about the condition and its clinical care, causes, diagnosis, and treatment. A robust patient registry will allow for a better understanding of the patient population, their co-morbid conditions, treatment effectiveness, and will allow the advancement of additional research. The registry also aims to strengthen future FND research and minimize bias by collating a large sample size of baseline data to accelerate research, increase the understanding of the condition and support the development of more effective treatments.
Learn About the Registry
Frequently Asked Questions
Why should I participate in the patient registry?
By taking part in the registry, participants will have the satisfaction of knowing they are playing an important role in advancing research on FND. They may also learn about additional future research studies (with separate informed consent) for which they qualify that will help advance understanding of their FND.
Each individual’s contribution will, in aggregate, all for a large pool of data that may further the understanding of important factors which affect Functional Neurological Disorder.
Each individual’s contribution will, in aggregate, all for a large pool of data that may further the understanding of important factors which affect Functional Neurological Disorder.
Can I change my sharing preferences?
You can change any of your settings at any time.
What if my health data changes?
If your health changes or your sharing preferences change, then, so can your data.
Who has access to my health information?
Only those you allow to have access will see your data.
Anyone with a current or past diagnosis of functional neurological disorder (FND) as diagnosed by a medical doctor can take part. FND diagnoses may go by a variety of terms, including:
- Functional Neurological Disorder (FND)
- Functional Neurological Symptoms Disorder (FNSD)
- Functional Movement Disorder (FMD)
- Conversion Disorder (CD)
- Psychogenic Movement Disorder
- Somatoform/Somatization Disorder
- Functional Seizures
- Non‐Epileptic Seizures (NES)
- Psychogenic Non‐Epileptic Seizures (PNES)
- Non‐Epileptic Attack Disorder (NEAD)
- Dissociative Seizures
- Dissociative Neurological Symptom Disorder
- Functional Weakness Disorder
- Functional Dystonia
- Persistent Perceptual Postural Dizziness (PPPD)
- Functional Cognitive Disorder (FCD)
Currently, the registry is only available in English. To take part you must speak and write in English.
Both adults and minors via guardian are eligible to participate.
With this study, patients enrolling in the 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 a 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 a time you have sufficient energy and when you won’t be interrupted.
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.
Possible Benefits to Self
By joining the registry, you’re helping advance FND research. You might also learn about future studies you could participate in. These studies may offer new treatment approaches and close monitoring by leading experts.
Possible Benefits to Others
- Your contribution will add to a large pool of data, helping researchers better understand FND.
- The Registry will provide researchers access to a large group of potential participants, making it easier to find specific groups for studies.
- Having patient-reported outcomes all in one place will also be a valuable resource for research.
FND Hope has partnered with the Genetic Alliance and partner Aretetic Solutions to re-launch the FND Registry for Research through Aretetic’s DigitalCabinet platform, a powerful patient-centered platform for health data capture, consent, and collaboration that is built with privacy, compliance, and global research needs in mind. DigitalCabinet also hosts registries for numerous other communities.
By utilizing the By utilizing the Aretetic’s DigitalCabinet platform, registry participants have control over how their reported outcomes and personal information are shared.
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.
If your health changes, then you can update the data in the registry by re-taking completed surveys.
You can change any of your settings at any time.