For Researchers
As part of our non-profit mission, we offer tools to enable research on bvFTD, PPA, FTD-ALS, CBS, and PSP.
Options are below. For details on all, contact the Registry Director at director@FTDregistry.org.
RECRUITMENT SUPPORT FOR CLINICAL RESEARCH STUDIES
We help potential participants learn about the research opportunities that may be right for them. All approved clinical research studies are listed on our “Find a Study” webpage and on private dashboards that Registry participants can filter by their interests. Research studies can also be promoted via email to participants that match specified parameters, or publicized broadly through newsletters, social media, and more. Apply for support here.
REGISTRY DATA IN YOUR RESEARCH
Deidentified or anonymous data is available for research. Most data can be shared directly under a data use agreement for approved research questions. You can also apply to have Registry staff query existing data, collect survey data on your behalf, or propose a collaborative research study. Contact the Registry Director with your ideas director@FTDregistry.org. And stay tuned! Our team is building a researcher portal and cohort builder to allow researchers to explore the categories of data and to submit requests.
SPREAD THE WORD AND ACCESS REGISTRY RESOURCES
The field of FTD clinical research is actively evolving. The availability of participants has become a rate limiting factor in developing effective disease-modifying therapies. Meanwhile, it is difficult for clinicians to stay current on enrolling clinical studies and for trial sponsors to identify the clinical care sites that may have eligible research participants for their clinical trial.
We encourage clinicians to:
- join the Registry themselves, to access the filterable dashboards of enrolling research studies and the broader digest of information
- share information of the Registry to patients & families that may want to join. Our non-profit will protect participant privacy while helping to empower people to decide where and how to participate in research. We can also guide researchers and trial sponsors to the clinical centers and geographic regions with potentially eligible and interested participants. Contact director@FTDregistry.org for family-friendly brochures and other info-sharing tools.
OTHER WAYS FOR RESEARCHERS & HEALTHCARE PROFESSIONALS TO COLLABORATE
If you have an idea on how the Registry can better advance research on FTD disorders and amplify the voice of people with lived experience, we would love to hear it!
Partner With Us
Contact the Registry Director at director@FTDregistry.org to learn more about research partner opportunities.
Connect with Others
Spread the word about the FTD Disorders Registry. We have a toolkit of social media and information brochures available.
Email the Registry Director >
We want to hear from you!