"*" indicates required fields Step 1 of 6 16% Thank you for your interest in participating in LBD research studies – without volunteers like you from the LBD community, these critical studies could not occur. Your answers to these questions will help ensure that we send you notifications about clinical studies that may interest you. Completing this survey should take about 10 minutes. Please complete the survey in one sitting – if this window is closed before the survey is complete, your responses will not be saved and you will have to start over.What is your first name?*What is your last name?*What is your preferred email address?* Where do you reside?*City*State*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificZip Code*What is your personal connection to Lewy body dementia (LBD)?*Please choose oneI have LBD symptoms.I am a caregiver, friend or family member of someone with LBD symptoms. What is your age?*What age is the person with LBD symptoms?*What is your sex?*Please choose oneMaleFemaleNon-binaryPrefer not to answerWhat is the sex of the person with LBD symptoms?*Please choose oneMaleFemaleNon-binaryPrefer not to answerWhat is the highest level of education you completed?*Please choose one8th grade or belowSome high schoolHigh school diploma or GEDSome collegeBachelor's degreeMaster's degreeDoctoral degreeWhat is the highest level of education the person with LBD symptoms completed?*Please choose one8th grade or belowSome high schoolHigh school diploma or GEDSome collegeBachelor's degreeMaster's degreeDoctoral degreeTo help us better understand how LBD and possible treatments may affect people differently, research studies need people from a broad range of ethnic and racial backgrounds. Which of the following best represents you? (Select all that apply.) American Indian or Alaska Native Asian Black or African-American Native Hawaiian or other Pacific Islander White Other (please specify) Prefer not to answer OtherWhich of the following best represents the person with LBD symptoms? (Select all that apply.) American Indian or Alaska Native Asian Black or African-American Native Hawaiian or other Pacific Islander White Other (please specify) Prefer not to answer OtherAre you Hispanic or Latinx? Yes No Prefer not to answer Is the person with LBD symptoms Hispanic or Latinx? Yes No Prefer not to answer What is your primary language? English Spanish Other If English is not your first language, are you comfortable having your memory tested in English? Yes No What is the primary language of the person with LBD symptoms? English Spanish Other If English is not the first language of the person with LBD symptoms, are they comfortable having their memory tested in English? Yes No Based on your best recollection, between changes in cognition and movement, which was the most prominent symptom to appear FIRST?* Cognitive impairment (such as changes in thinking, reasoning or memory) began at least a year before movement symptoms (such as slowness, stiffness, tremor, changes in posture or walking) Problems with movement began at least a year before cognitive symptoms Both cognitive and movement changes appeared within a year of each other Based on your best recollection, between changes in cognition and movement, which was the most prominent symptom to appear FIRST in the person with LBD symptoms?* Cognitive impairment (such as changes in thinking, reasoning or memory) began at least a year before movement symptoms (such as slowness, stiffness, tremor, changes in posture or walking) Problems with movement began at least a year before cognitive symptoms Both cognitive and movement changes appeared within a year of each other Which of the following best describes you?* I have no cognitive impairment, but do have REM sleep behavior disorder (acting out dreams physically while asleep). I live independently, but because of my changes in thinking, reasoning or memory, it takes me longer to do some things. Mild dementia - Because of my changes in thinking, reasoning or memory, I need a little help from another person sometimes. Moderate dementia - Because of my changes in thinking, reasoning or memory, I need help from another person every day. Advanced dementia - Because of my changes in thinking, reasoning or memory, I need help with essentially everything. Which of the following best describes the person with LBD symptoms?* Has no cognitive impairment, but does have REM sleep behavior disorder (acting out dreams physically while asleep). Lives independently, but because of changes in thinking, reasoning or memory, it takes them longer to do some things. Mild dementia - Because of changes in thinking, reasoning or memory, they need a little help from another person sometimes. Moderate dementia - Because of changes in thinking, reasoning or memory, they need help from another person every day. Advanced dementia - Because of or memory, they need help from another person with essentially everything. Is there a history of dementia or Parkinson's disease in your family, such as your siblings, parents, aunts, uncles or grandparents?* Yes No I don't know Is there a history of dementia or Parkinson's disease in the family of the person with LBD symptoms, such as their siblings, parents, aunts, uncles or grandparents?* Yes No I don't know Which best reflects your experience in participating in research?* I have not participated in any research studies before. I have participated in a study before, but it was not about LBD. I have participated in an LBD study before. I am currently in a study, but it is not about LBD. I am currently in an LBD study. Which best reflects the experience in participating in research of the person with LBD symptoms?* They have not participated in any research studies before. They have participated in a study before, but it was not about LBD. They have participated in an LBD study before. They are currently in a study, but it is not about LBD. They are currently in an LBD study. Would you be willing to be part of an LBD clinical trial testing new medications?* Yes No Would the person with LBD symptoms be willing to be part of an LBD clinical trial testing new medications?* Yes No Would you be willing to answer survey questions for an LBD research study?* Yes No Would the person with LBD symptoms be willing to answer survey questions for an LBD research study?* Yes No Some studies recruit both people who have LBD and people who do not have LBD. Those who do not have the disease being studied are called "healthy controls." Test results from healthy controls provide important insights when compared to test results of people with LBD. Would you be interested in participating in a study that needs participants who do not have LBD symptoms?* Yes No All research studies involve assessments which may include surveys, interviews, physical examinations and/or medical tests. The tests may include studying your genes by taking a sample of your DNA, either by blood or saliva. The results are kept confidential by the study team. There is one exception; if a medical condition is discovered that requires medical care, that information may be shared with your physician or added to your medical record.Would you be willing to donate a sample of blood for LBD research?* Yes No Would the person with LBD symptoms be willing to donate a sample of blood for LBD research?* Yes No Would you be willing to donate a sample of DNA for LBD research?* Yes No Would the person with LBD symptoms be willing to donate a sample of DNA for LBD research?* Yes No Brain imaging scans provide information on the function and structure of the brain. Magnetic resonance imaging (MRI) uses a magnetic field to make pictures. Positron emission tomography (PET) uses a tracer drug to show how tissue and organs function. A single-photon emission computerized tomography (SPECT) scan also uses a tracer drug to create a 3-D picture of the brain and can show what areas are more or less active.Would you be willing to have a brain imaging scan for LBD research?* Yes No Would the person with LBD be willing to have a brain imaging scan for LBD research?* Yes No The clear fluid that flows through the spinal column and brain provides key information about proteins linked to LBD.Would you be willing to have a lumbar puncture (spinal tap) for LBD research?* Yes Possibly No Would the person with LBD symptoms be willing to have a lumbar puncture (spinal tap) for LBD research?* Yes Possibly No Some studies include an option to donate one's brain after death. A brain donation allows researchers to do a brain autopsy. The results of the brain autopsy can then be compared to results of medical tests done while the person was alive. The comparison can provide a more clear answer about what caused the person’s symptoms during life. The results of the brain autopsy can also shed light on how exactly LBD affects the brain.As part of being in a study, would you consider donating your brain after death for the purpose of a brain autopsy?* Yes Possibly No As part of being in a study, do you think the person with LBD symptoms would consider donating their brain after death for the purpose of a brain autopsy?* Yes Possibly No What distance could you travel to participate in an LBD study?* Between 1 and 50 miles Up to 100 miles No travel restrictions Only through virtual study visits What distance could the person with LBD symptoms travel to participate in an LBD study?* Between 1 and 50 miles Up to 100 miles No travel restrictions Only through virtual study visits Studies of different types can all help answer important questions about LBD. Which of the following would you like to learn about?SELECT ALL THAT APPLY* Studies that explore potential treatments Studies that may help advance early diagnosis Studies that may help understand how LBD progresses over time Studies to better understand or reduce the impact of LBD on people diagnosed with LBD and caregivers NameThis field is for validation purposes and should be left unchanged.
