Review of the Task Force Report on PRO Data Collection in Clinical Trials Using Mixed Modes

There is an urgent need to develop reliable and sensitive blood-based biomarkers of Alzheimer’s disease (AD) that can be used for screening and to increase the efficiency of clinical trials. The European Union-North American Clinical Trials in Alzheimer’s Disease Task Force (EU/US CTAD Task Force) discussed the current status of blood-based AD biomarker development at its 2018 annual meeting in Barcelona, Spain. Recent improvements in technologies to assess plasma levels of amyloid beta indicate that a single sample of blood could provide an accurate estimate of brain amyloid positivity. Plasma neurofilament light protein appears to provide a good marker of neurodegeneration, although not specific for AD. Plasma tau shows some promising results but weak or no correlation with CSF tau levels, which may reflect rapid clearance of tau in the bloodstream. Blood samples analyzed using -omics and other approaches are also in development and may provide important insight into disease mechanisms as well as biomarker profiles for disease prediction. To advance these technologies, international multidisciplinary, multi-stakeholder collaboration is essential.

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Transitions From Telephone Surveys to Self-Administered and Mixed-Mode Surveys: Aapor Task Force Report

Journal of Survey Statistics and Methodology ◽

10.1093/jssam/smz062 ◽

2020 ◽

Cited By ~ 3

Author(s):

Kristen Olson ◽

Jolene D Smyth ◽

Rachel Horwitz ◽

Scott Keeter ◽

Virginia Lesser ◽

...

Keyword(s):

Mixed Mode ◽

Task Force ◽

Response Rates ◽

The Self ◽

Empirical Literature ◽

Self Administration ◽

Task Force Report ◽

Telephone Surveys ◽

Mixed Modes ◽

Survey Administration

Abstract Telephone surveys have been a ubiquitous method of collecting survey data, but the environment for telephone surveys is changing. Many surveys are transitioning from telephone to self-administration or combinations of modes for both recruitment and survey administration. Survey organizations are conducting these transitions from telephone to mixed modes with only limited guidance from existing empirical literature and best practices. This article summarizes findings by an AAPOR Task Force on how these transitions have occurred for surveys and research organizations in general. We find that transitions from a telephone to a self-administered or mixed-mode survey are motivated by a desire to control costs, to maintain or improve data quality, or both. The most common mode to recruit respondents when transitioning is mail, but recent mixed-mode studies use only web or mail and web together as survey administration modes. Although early studies found that telephone response rates met or exceeded response rates to the self-administered or mixed modes, after about 2013, response rates to the self-administered or mixed modes tended to exceed those for the telephone mode, largely because of a decline in the telephone mode response rates. Transitioning offers opportunities related to improved frame coverage and geographic targeting, delivery of incentives, visual design of an instrument, and cost savings, but challenges exist related to selecting a respondent within a household, length of a questionnaire, differences across modes in use of computerization to facilitate skip patterns and other questionnaire design features, and lack of an interviewer for respondent motivation and clarification. Other challenges related to surveying youth, conducting surveys in multiple languages, collecting nonsurvey data such as biomeasures or consent to link to administrative data, and estimation with multiple modes are also prominent.

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Good Research Practices for Cost-Effectiveness Analysis Alongside Clinical Trials: The ISPOR RCT-CEA Task Force Report

Value in Health ◽

10.1111/j.1524-4733.2005.00045.x ◽

2005 ◽

Vol 8 (5) ◽

pp. 521-533 ◽

Cited By ~ 413

Author(s):

Scott Ramsey ◽

Richard Willke ◽

Andrew Briggs ◽

Ruth Brown ◽

Martin Buxton ◽

...

Keyword(s):

Clinical Trials ◽

Cost Effectiveness ◽

Task Force ◽

Cost Effectiveness Analysis ◽

Research Practices ◽

Task Force Report ◽

Effectiveness Analysis ◽

Good Research

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International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies Task Force Report: Beyond Eurocleft

The Cleft Palate-Craniofacial Journal ◽

10.1597/14-120 ◽

2014 ◽

Vol 51 (6) ◽

pp. 146-155 ◽

Cited By ~ 9

Author(s):

Gunvor Semb ◽

Keyword(s):

Data Collection ◽

Outcome Measures ◽

Cleft Lip ◽

Cleft Lip And Palate ◽

Task Force ◽

Multidisciplinary Care ◽

Lessons Learned ◽

Outcome Studies ◽

Standards Of Care ◽

Task Force Report

The assigned objective for the Task Force Beyond Eurocleft was “to make recommendations for initiations of local and/or participation in multi-national cleft outcome studies and consist of individuals from the European experience with cleft outcome studies (Scandcleft, Eurocleft) and those who have initiated, or intend to initiate, similar studies in other geographical areas.” By May 2013 the Task Force (TF) consisted of 183 members from 59 countries. It was agreed that this initiative should be truly global and include all cleft specialties as well as representatives from cleft support groups in recognition of the huge commitment for improving cleft care worldwide. The vision for this group is to build a dynamic, well-functioning TF that will work globally and be multidisciplinary with inclusive and respectful behavior to improve care for all individuals born with cleft lip and/or palate. As there is a large diversity in needs and interest in the group a range of parallel approaches would be required depending on the experience, resources, and challenges of regions, teams, and individuals. Important ideas for future work were: (1) Work on a global survey of access, existing outcome studies, current collaborations, and lessons learned. (2) Work towards the creation of a lasting, living resource for newcomers to intercenter collaboration that is kept fresh with new reports, copies of relevant publications, model grant applications, and a list of volunteers with the right experience to provide support and guidance for new initiatives. (3) Develop simple online training modules to provide information about the benefits and principles of multidisciplinary care, collaborative data collection and auditing short and longer-term outcomes. (4) Establish subgroups that will work within all regions of the world with regional and national leaders identified. An evaluation of current standards of care should be undertaken and country/region specific remedies to optimize treatment outcome suggested. (5) Reach agreement on minimum standards of care, minimum record collection, and reach consensus on simple outcome measures in all disciplines. This should include all cleft types and all ages. These standards could be used to encourage governments to fund multidisciplinary care. (6) Teams will be encouraged to start and continue recordkeeping using simple and agreed protocols, according to agreed standards of minimum records and later share their data with other teams and then, embark on outcome studies. (7) Teams already active in research should: Create a register for cleft professionals and teams to reach agreement of contemporary and comprehensive multidisciplinary outcome measures, explore the possibilities using modern technology and plan large multi-national studies. A patient/parent centered data collection should always be included. These studies need funding. One task could also be exploring whether health care at a distance could be initiated using new technology.

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