Section 5B - Data Collection (Phase 3 - 1/2011, rev. 8/2011)
Section 5B - Page 2
Cohort
Study
5.1.2.
Retention Strategies
We will continue to employ traditional, proven, cohort retention strategies including:
birthday cards, study newsletters, updating contact information annually,
utilizing
internet-based search systems to locate individuals lost to follow-up, using cell-phone
text messaging and e-mail, offering flexible study date appointments including home
visits, offering assistance with transportation,
mailing pre-visit instructions, a reminder
call prior to the visit, acknowledgement of participation, and participant remunerations
that are appropriate for the length and the respondent burden of the proposed study visit.
Investigators and study personnel will also continue to solicit the support of diabetes
providers to encourage on-going study participation. Communications
with providers
include letters, e-mail messages, telephone calls, newsletters, individual discussions, and
group presentations of study goals and preliminary results.
We recently sought expert advice on marketing the study to youth and families affected
by diabetes from the American Diabetes Association (ADA).
Their three major
recommendations were 1) to update the SEARCH public website to make it more
appealing to youth and families, 2) to utilize social networking, such as Facebook and
MySpace to communicate with parents and participants, and 3) focus
on positive
messages about the study. Pilot work on social networking strategies is currently
planned. During the planning of SEARCH 3, we conducted a survey of a sample of
individuals (n=30) who previously were non-responders to SEARCH visits. The most
common barriers to participation were multiple demands of life and for youth
specifically, not wanting to spend more time with diabetes-related activities. The most
common reasons for potential future participation
were a desire to help others, to
participate in finding a cure for diabetes, and to increase our understanding of diabetes.
New strategies will be informed by these findings. We have also increased monetary
remuneration from $80 in the SEARCH 2 follow-up visit to $120 for participation in the
SEARCH 3 Cohort Study research visit. SEARCH will develop online forms to
complete questionnaires for the study to enhance study participation and reduce
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