Alzheimer DiseaseNCT00059410
Alzheimer's Disease Treatment and Illness Perceptions Survey (TIPS) II
An observational study of Alzheimer Disease, run by Alzheimer's Association at 1 site in United States.
Trial summary
The TIPS Study, or Treatment and Illness Perceptions Survey, is a study funded by the national Alzheimer's Association to learn more about differences between African Americans' and Whites' attitudes, beliefs, and experiences related to Alzheimer's disease (AD). Read more about this study
- Who is it for?
- Any ageHealthy volunteers can take part
- Conditions the study is for
- Alzheimer Disease
- How many people
- 210 participants
- Where
- 1 siteUnited States
- Study dates
- Jan 2003to Sep 2005
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Who may be able to join
- Three groups of participants are sought to take part in the survey:
- 70 primary caregivers(current or former) of persons with AD, or related memory disorders
- 70 adult children and siblings of people with AD or related memory disorders
- 70 adults age 40 and older without immediate family history of AD or related memory disorders
Who cannot join
- Not fluent in English
- Cognitive impairment that would preclude responding to a 30-minute telephone survey
Trial locations and contacts
1 site in 1 country.
United States1 site
Boston University School of Medicine, Alzheimer's Disease Center
Boston, Massachusetts, 02118
About this study
The TIPS Study, or Treatment and Illness Perceptions Survey, is a study funded by the national Alzheimer's Association to learn more about differences between African Americans' and Whites' attitudes, beliefs, and experiences related to Alzheimer's disease (AD). The study involves a one-time 30-minute telephone survey in which participants are asked about a range of topics related to AD, including their personal experiences, their beliefs about the disease's symptoms and risk factors, and their attitude toward possible future treatment options. Information from the survey will be used to develop more culturally sensitive health education and healthcare services for persons with AD.
Read the detailed description
The main goal of the Boston University's TIPS II project is to examine differences in Alzheimer's disease (AD) illness perceptions between African Americans and Whites in order to better understand attitudes and beliefs and to develop more culturally sensitive health services for AD. This 30-minute telephone survey will include a total of 140 first-degree relatives and caregivers of people with AD, as well as a comparison group of 70 adults without family history. The researchers will assess 1) beliefs about AD; 2) the perceived threat it poses; 3) sources of information about AD; 4) knowledge of basic facts about AD; 5) appraisal of AD treatments; and 6) intentions regarding current and emerging care options. Based on preliminary data, this study hypothesize that, as compared to Whites, African Americans will report lower levels of perceived threat, fewer sources of information, less awareness of facts, and less interest in care options. Focus group interviews with African American participants will help interpret study findings and inform recommendations for health education interventions.
Findings will inform the development of a set of recommendations for AD health educators that will help them tailor their interventions to African Americans. Such educational programs promote increased use of assessment, treatment, and caregiver assistance services. Results will also be used as pilot data in a proposal for a national survey of caregivers and relatives. This program of research will address a growing need for increased understanding of beliefs, knowledge, and intentions regarding AD. A total of 210 participants are being sought (105 African Americans, and 105 Whites). Participants who complete the survey will be given a $10.00 check, plus informational brochures on AD and the latest newsletter from the Boston University Alzheimer's Disease Center.
- Conditions
- Alzheimer Disease
- Keywords
- Alzheimer disease, Caregivers, African Americans, Perceptions, Cultural Competency
- Medical subject headings
- Alzheimer Disease
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted28 Apr 2003 (estimated)
- Study startJan 2003
- Primary completionSep 2005
- Study completionSep 2005
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for Alzheimer DiseaseStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Time perspective
- Prospective
- Enrolment
- 210 participants
Sponsor and investigators
- Lead sponsor
- Alzheimer's Association
- Sponsor type
- University, hospital or other
- Investigators
- Scott Roberts, PhD, Study director, Boston University Alzheimer's Disease Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00059410
- Sponsor's protocol ID
- IA0045
- Other IDs
- NIRG-02-3712, BUMC 2002-308
- Status last verified
- Feb 2008
- First submitted
- 24 Apr 2003
- Last updated
- 11 Dec 2009
- Results posted
- No
Publications
Roberts JS, Connell CM. Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Assoc Disord. 2000 Jul-Sep;14(3):129-136,Discussion 127-8. doi: 10.1097/00002093-200007000-00003.
PubMed 10994653Roberts JS. Anticipating response to predictive genetic testing for Alzheimer's disease: a survey of first-degree relatives. Gerontologist. 2000 Feb;40(1):43-52. doi: 10.1093/geront/40.1.43.
PubMed 10750312Roberts JS, Connell CM, Cisewski D, Hipps YG, Demissie S, Green RC. Differences between African Americans and whites in their perceptions of Alzheimer disease. Alzheimer Dis Assoc Disord. 2003 Jan-Mar;17(1):19-26. doi: 10.1097/00002093-200301000-00003.
PubMed 12621316
Study at a glance
From the registry record, last updated by the sponsor on 11 Dec 2009. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Alzheimer's Disease Treatment and Illness Perceptions Survey (TIPS) II
- ClinicalTrials.gov ID
- NCT00059410
- Acronym / sponsor ID
- IA0045
- Conditions
- Alzheimer Disease
- Keywords
- Alzheimer disease, Caregivers, African Americans, Perceptions, Cultural Competency
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 210 participants
- Lead sponsor
- Alzheimer's AssociationUniversity, hospital or other
- Study start
- Jan 2003
- Primary completion
- Sep 2005 (actual)
- Study completion
- Sep 2005 (actual)
- First posted
- 28 Apr 2003 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The TIPS Study, or Treatment and Illness Perceptions Survey, is a study funded by the national Alzheimer's Association to learn more about differences between African Americans' and Whites' attitudes, beliefs, and experiences related to Alzheimer's disease (AD). The study involves a one-time 30-minute telephone survey in which participants are asked about a range of topics related to AD, including their personal experiences, their beliefs about the disease's symptoms and risk factors, and their attitude toward possible future treatment options. Information from the survey will be used to develop more culturally sensitive health education and healthcare services for persons with AD.
Detailed description
The main goal of the Boston University's TIPS II project is to examine differences in Alzheimer's disease (AD) illness perceptions between African Americans and Whites in order to better understand attitudes and beliefs and to develop more culturally sensitive health services for AD. This 30-minute telephone survey will include a total of 140 first-degree relatives and caregivers of people with AD, as well as a comparison group of 70 adults without family history. The researchers will assess 1) beliefs about AD; 2) the perceived threat it poses; 3) sources of information about AD; 4) knowledge of basic facts about AD; 5) appraisal of AD treatments; and 6) intentions regarding current and emerging care options. Based on preliminary data, this study hypothesize that, as compared to Whites, African Americans will report lower levels of perceived threat, fewer sources of information, less awareness of facts, and less interest in care options. Focus group interviews with African American participants will help interpret study findings and inform recommendations for health education interventions.
Findings will inform the development of a set of recommendations for AD health educators that will help them tailor their interventions to African Americans. Such educational programs promote increased use of assessment, treatment, and caregiver assistance services. Results will also be used as pilot data in a proposal for a national survey of caregivers and relatives. This program of research will address a growing need for increased understanding of beliefs, knowledge, and intentions regarding AD. A total of 210 participants are being sought (105 African Americans, and 105 Whites). Participants who complete the survey will be given a $10.00 check, plus informational brochures on AD and the latest newsletter from the Boston University Alzheimer's Disease Center.
Study design
- Time perspective
- Prospective
Who may qualify
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (4 listed)
- 70 primary caregivers(current or former) of persons with AD, or related memory disorders
- 70 adult children and siblings of people with AD or related memory disorders
- 70 adults age 40 and older without immediate family history of AD or related memory disorders
Key exclusion criteria (2 listed)
- Not fluent in English
- Cognitive impairment that would preclude responding to a 30-minute telephone survey
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Not reported in the source record.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 11 Dec 2009.
- Background: PubMed 10994653Roberts JS, Connell CM. Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Assoc Disord. 2000 Jul-Sep;14(3):129-136,Discussion 127-8. doi: 10.1097/00002093-200007000-00003.
- Background: PubMed 10750312Roberts JS. Anticipating response to predictive genetic testing for Alzheimer's disease: a survey of first-degree relatives. Gerontologist. 2000 Feb;40(1):43-52. doi: 10.1093/geront/40.1.43.
- Background: PubMed 12621316Roberts JS, Connell CM, Cisewski D, Hipps YG, Demissie S, Green RC. Differences between African Americans and whites in their perceptions of Alzheimer disease. Alzheimer Dis Assoc Disord. 2003 Jan-Mar;17(1):19-26. doi: 10.1097/00002093-200301000-00003.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Scott Roberts, PhD study director
Boston University Alzheimer's Disease Center
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Alzheimer Disease, run by Alzheimer's Association at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 11 Dec 2009. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT00059410, which also lists 3 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 11 Dec 2009.