FND Hope is interested in advancing accelerated research into the clinic care, cause, diagnosis, treatment, and recovery from FND. FND Hope does this through collaboration with researchers on their research projects and through our Scientific Registry for FND.
How To Partner With FND Hope On Research
Research Priorities
FND Hope has surveyed FND patients to identify areas that are priorities for advancing research. These include the following:
- Treatment for FND, including:
- efficacy of such treatments
- tailoring of treatments to patient symptoms
- post-treatment (long-term) efficacy
- relapsing/remitting nature for some patients/symptoms
- Outcome measures for FND Treatment
- Neuroimaging
- Biomarkers
- Pharmaceutical treatments
- All risk factors
- Genetics/epigenetics
Partner with the Registry in several ways:
Submitting a research proposal
Please read further to learn more about our research resources, policies, procedures, and more. Please be advised, the review process can take anywhere from 3-6 weeks depending on the project and materials submitted.
Recruitment of participants matching independent study criteria.
Ideal for researchers or advocacy groups seeking to recruit for their own studies.
If you are recruiting subjects for an existing study, we are able to notify the entire FND Scientific Registry participant community or selected participants. We are also able to provide notice to the FND Hope constituency through email, website posting and social media.
If you are recruiting subjects for an existing study, we are able to notify the entire FND Scientific Registry participant community or selected participants. We are also able to provide notice to the FND Hope constituency through email, website posting and social media.
What we need from you:
Please email us a copy of your protocol, ethics board appoval documents, and any other relavent materials to research@fndhope.org
Work with the data collected through the FND Scientific Registry
This option is ideal for researchers or advocacy groups seeking to do hypothesis generation.
The Scientific Registry currently hosts a baseline survey that was developed in collaboration with leading FND researchers. It was broken into three parts for ease of completion by patients.
It uses a mix of standardized instruments used across conditions, as well as questions customized to the FND experience. The surveys includes the following sections:
- The Initial Survey gives an introduction and asks patients about demographics, diagnosis, impact on life, symptoms, treatment and comorbid conditions.
- The Follow-up Survey asks about fatigue, pain, pain interference, sleep disturbance, environmental exposures, and family history.
- The Final Survey is on Life Event Impact and asks about Adverse Childhood Experiences (ACEs) and other trauma.
To see the full survey, click here.
- You can request access to this data for all registrants or for a particular subset.
What we need from you:
- You will need to review the Data Access Guidelines and complete the forms required, including the Research Proposal Form and Data Access Agreement. You will discuss the pricing for data access as part of your proposal process.
Recruit new participants to the FND Scientific Registry
Ideal for providers or advocacy groups seeking to connect patients and members to research opportunities.
- FND Scientific Registry will provide you with tools to promote the registry, including:
- A graphic about the registry that can be placed on your website.
- Brochures about the registry that can be distributed in-person.
- FND Scientific Registry can also set up tools to help you quantify the number of participants you recruit:
- We can create a unique “referral code” for you as a practitioner/researcher or your organization; together with a custom link which will allow for easy tracking of recruitment using Google Analytics. Your referral code can be used on printed resources, and your custom referral code link can be used in any advertisements online, including the link you place on your website. By using this code, we will be able to provide you with information about your outreach.
What we need from you:
- Approval to use your institutional logo on the registry landing page as one of our “institutional partners”.
- Acknowledgement, listing and link to the registry (using referral code link) on your website.
- Understanding that one of the goals of the registry is to be as inclusive as possible in order to give as many researchers as needed access to the data. There will be no exclusivity and we actively encourage participation from as many patients, clinicians and researchers as possible!
Release a study to registry participants on the FND Scientific Registry
Ideal for researchers or advocacy groups seeking to conduct studies of their own with an existing cohort.
- We will work with you to release surveys of your own design to registry participants, and support outreach about new survey opportunities to those same participants.
What we need from you:
- Your expertise as a survey designer: please come to us with a fairly good understanding of the questions you’d like to ask.
- Your time (or that of your staff) to test the survey, once designed.
- You will need to review the Data Access Guidelines and complete the forms required, including the Research Proposal Form and Data Access Agreement. You will discuss the pricing for data access as part of your proposal process.
SUBMITTING A RESEARCH PROPOSAL
FND Hope works closely with investigators and FND Scientific Registry participants to assure that approved studies will benefit people with FND.
To submit a proposal for consideration of any of the types of partnerships listed above:
FND Hope is prioritizing collaboration on research that fits within these areas. At this time and due to an influx of research requests, FND Hope does not review unpublished work or student thesis papers.
Review the FND Scientific Registry Data Access Guidelines and Data Access Agreement.
Submit your proposal using the FND Scientific Registry Research Proposal Form to research@fndhope.org.
Advisory Committee will review your proposal. Proposals not approved may be re-submited at any time.
A data set or direct access to de-identified FND Scientific Registry data will be provided as determined by the Advisory Committee.
OPEN ACCESS AND DATA-SHARING
FND Hope has a policy of providing its research resources on an open-access basis, meaning that we will work with any investigator, at any institution, anywhere in the world who is conducting valid research that is in alignment with our mission and policies.
We also have a policy supporting data sharing among investigators. Researchers who use the FND Scientific Registry resources in their studies are obligated to share the data and/or findings generated using these resources with FND Hope for further use, including sharing with the broader scientific community.
*Please note: Patient data is stored and protected through the Genetic Alliance data base.
Pricing
Pricing for studies using FND Scientific Registry data, samples, and other FND Hope resources is determined on a case-by-case basis by the FND Scientific Registry Advisory Committee. Please contact research@fndhope.org for more information.
FND RESEARCH ADVISORY COMMITTEE
The FND Hope Research Advisory Committee is responsible for providing oversight and advice for FND Hope’s research-related activities, including:
- Informing researchers about the FND Scientific Registry and encouraging them to develop studies using FND Scientific Registry resources.
- Facilitating engagement between researchers and FND Scientific Registry participants.
- Informing patients about FND Hope’s research collaborations and, where relevant, soliciting their input on priority research activities.
- Facilitating the development of new research studies based on topics of importance to the FND patient community.
- Publishing and disseminating results from collaborative research projects.
- Providing review and approval of all research studies to be conducted in collaboration with the FND Scientific Registry.
Current members include:
- Bridget Mildon, FND Hope International
- Elizabeth Smith, FND Hope International
- Dawn Golder, FND Hope UK