FTD Disorders Registry & AFTD Study Distribution RequestPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Submitter's Name *Submitter's Email address * Submitting organization/institution/company *Principal investigator (name) Principal investigator (email) Is the primary point of contact different than the person submitting? YesNoPrimary study point of contact (name)Primary study point of contact (email)Type of study *Clinical trialNonpharmacological interventionNatural history studySurveyFocus groupOther, specifyType of Study: OtherIf applicable, please provide the clinicaltrials.gov NCT ID for this study.Please provide a brief description of the study purpose or rationale. *Explain how this study will benefit people impacted by FTD disorders. *Participant category *Persons diagnosed with an FTD disorderPersons at risk for an FTD disorder (e.g., asymptomatic genetic carriers)Family members of persons diagnosedPersons with any neurodegenerative diseaseCurrent care partnersFormer care partnersHealthy controlsHealthcare providersOther, specifyCategory: OtherParticipant FTD diagnosis category (if applicable) Behavioral variant FTD (bvFTD)Primary progressive aphasia (PPA)Corticobasal syndrome (CBS)Progressive supranuclear palsy (PSP)FTD-ALSOther, specifyDiagnosis: OtherParticipant gene variant (if applicable)MAPTGRNC9orf72Other, specifyGene: OtherWhat is the format for study participation? In-person at study siteIn-person via home visitsRemoteHybridOther, SpecifyStudy Format: Other *If in-person participation is required, do you provide support for travel expenses?Yes, full travel costs are coveredYes, partial travel costs are coveredNo, travel costs are not coveredDescribe the participant commitment, including approximate total number of study or home visits; total study duration (weeks/months/years); estimated out-of-pocket costs. *Procedures (if applicable) Blood drawLumbar punctureMRI scanPET scanNeuropsychological testingOther, specifyProcedure: OtherWill there be compensation or reimbursement for study participants? YesNoPlease describe the compensation for participants (e.g., gift card, travel costs)Please describe how the individual or study results will be communicated back to participants, if applicableIf applicable, please provide the name of an FTD expert who has reviewed the study protocol to ensure it is appropriate for people impacted by FTD Anticipated recruitment window (month/year to month/year) Additional questions or aspects of your study not addressed by this form: Desired dissemination method *FTD Disorders Registry DashboardFTD Disorders Registry Find a Study PageFTD Disorders Registry targeted recruitment campaignFTD Disorders Registry social mediaAFTD social mediaAFTD weekly newsletterAFTD support groups (for geographically bound studies)Other, specifyDissemination: OtherReply To Email Address *For the targeted recruitment campaign, what email address would you like replies to go to?Please upload your IRB approval or exemption letter * Drag & Drop Files, Choose Files to Upload Please upload any IRB approved surveys that will be used in this study. Drag & Drop Files, Choose Files to Upload You can upload up to 10 files. Please upload any IRB approved recruitment materials for the study. Drag & Drop Files, Choose Files to Upload You can upload up to 10 files. that select Other Please provide or upload approved language about the study and/or links to share via the chosen dissemination methods (examples can be viewed at https://ftdregistry.org/find-a-study/ Drag & Drop Files, Choose Files to Upload Approved Language (if not uploaded)Please select the geographic region for email dissemination *United States – all statesUnited States, select cities & states, specifyCanada – all provincesCanada – select cities & provinces, specifyGlobal – all Registry participantsGlobal – select countries, specifyOther, specifyGeographic Region: US *Geographic Region: Canada *Geographic Region: Countries *Geographic Region: Other *Please select the groups that should receive this email* *Persons diagnosed with an FTD disorderPersons at risk for an FTD disorder (e.g., asymptomatic genetic carriers)Family members of persons diagnosedPersons with any neurodegenerative diseaseCurrent care partnersFormer care partnersHealthcare providersOther, specifyGroups to Email: Other *Please provide a subject line for the emailPlease provide an email address for repliesSubmit
