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Record W1963849977 · doi:10.1177/1740774513510070

Recruitment and retention of participants for an international type 1 diabetes prevention trial: A coordinators’ perspective

2013· article· en· W1963849977 on OpenAlexafffundabout
Margaret Franciscus, Anita Nucci, Brenda Bradley, Heli Suomalainen, Ellen Greenberg, Diane Laforte, Päivi Kleemola, Mila Hyytinen, Marja Salonen, Mary Martin, Daniel Catte, Jacki Catteau, Thomas Mandrup‐Poulsen, Elja Arjas, Esa Läärä, Åke Lernmark, Barbara Schmidt, J. Krischer, Åkerblom Hk, Mikael Knip, Kristine G. Koski, Matti Koski, Eeva Pajakkala, David Cuthbertson, Lekshmy Shanker, H. M. Dosch, John Dupré, William D. Fraser, Margaret L. Lawson, JL. Mahon, M Sermer, Dorothy Becker, Andrea Nucci, Jerry P. Palmer, Minna Pekkala, Suvi Μ. Virtanen, N. J. Howard, Patricia Crock, Maria E. Craig, CL Clarson, Lynda Bere, David Thompson, Daniel L. Metzger, Cassondra Marshall, Jennifer Kwan, DK Stephure, Danièle Pacaud, Wendy Schwarz, Reda E. Girgis, Margaret Thompson, ML. Lawson, Denis Daneman, M-J Martin, Violeta Morı́n, L. Frenette, Suzanne Ferland, Saskia C. Sanderson, Karen E. Heath, Céline Huot, M Gonthier, Maryse Thibeault, Laurent Legault, EA Cummings, Karen A. Scott, T Bridger, Cheryl Crummell, Robyn L. Houlden, Adriana Breen, G.D. Carson, Sheila Kelly, Koravangattu Sankaran, Matthew Penner, R.J. White, Nancy M. P. King, James Popkin, Lindsay Robson, Eva Al Taji, Irena Aldhoon, Pavla Mendlová, J Vavřinec, Jan Vosáhlo, Ludmila Brázdová, Jitřenka Venháčová, Petra Venháčová, A. Cipra, Zdeňka Tomšíková, Petra Krckova, Pavla Gogelova, Ülle Einberg, M.‐A. Riikjärv, Anne Ormisson, Vallo Tillmann, Anna Parkkola, A‐L Järvenpää, A-M Hämälainen, Hannu Haavisto, Sirpa Tenhola, Pentti Lautala, Pia Salonen, Susanna Aspholm, Heli Siljander, C. Holm, Samuli Ylitalo, R Lounamaa, A. Nuuja, Timo Talvitie, Karin Lindström, Hanna Huopio, J Pensola, Riitta Veijola, Päivi Tapanainen, Abram Alar, Paavo Korpela, M.‐L. KÄÄR, Taina Mustila, Ritva Virransalo, Pirjo Nykänen, B Aschemeier, Thomas Danne, Olga Kordonouri, Dóra Krikovszky, L Madácsy, YM Khazrai, Ernesto Maddaloni, Paolo Pozzilli, Carla Mannu, Marco Songini, Carine de Beaufort, Ulrike Schierloh, Jan Bruining, Margriet Bisschoff, Aleksander Basiak, R Wasikówa, Marta Ciechanowska, Grażyna Deja, Przemysława Jarosz‐Chobot, Agnieszka Szadkowska, Katarzyna Cypryk, Małgorzata Zawodniak-Szałapska, Luís Castaño, Teba Gonzalez Frutos, Mirentxu Oyarzabal, Manuel Serrano‐Ríos, M-T Martinez-Larrad, F. Hawkins, D Arnau, Johnny Ludvigsson, Malgorzata Smolinska Konefal, Ragnar Hanås, Bengt Lindblad, N-Ö Nilsson, Hans Fors, Maria Nordwall, Anders Lindh, H Edenwall, Jurjan Aman, Christer Johansson, Margrit Gadient, Ε. Schoenle, A. Daftary, Cynthia C. Gilmour, Rachel Taculad, Marilyn Tanner‐Blasiar, Neil H. White, Uday Devaskar, Hersghel s. Horowitz, Lisa R. Rogers, Roberto Colón, Teresa Frazer, Jose Torres, Robin Goland, E. Robert Greenberg, Michelle Nelson, Holly C. Schachner, Barney Softness, Jorma Ilonen, Massimo Trucco, Lynn Nichol, Erkki Savilahti, Taina Härkönen, Outi Vaarala, Kristiina Luopajärvi

Bibliographic record

VenueClinical Trials · 2013
Typearticle
Languageen
FieldBiochemistry, Genetics and Molecular Biology
TopicDiabetes and associated disorders
Canadian institutionsSickKids FoundationHospital for Sick ChildrenMontreal Children's HospitalUniversity of ManitobaMount Sinai HospitalChildren's Hospital of Eastern Ontario
FundersNational Institute of Diabetes and Digestive and Kidney DiseasesNational Institute of Child Health and Human DevelopmentCanadian Institutes of Health ResearchNational Institutes of HealthNovo NordiskEunice Kennedy Shriver National Institute of Child Health and Human DevelopmentEuropean Foundation for the Study of DiabetesMead Johnson NutritionJuvenile Diabetes Research Foundation International
KeywordsType 2 diabetesPerspective (graphical)MedicineClinical trialPsychologyFamily medicineDiabetes mellitusPhysical therapyInternal medicineComputer scienceEndocrinology

Abstract

fetched live from OpenAlex

BACKGROUND: The Trial to Reduce Insulin Dependent Diabetes Mellitus in the Genetically at Risk (TRIGR) is the first multicenter international type 1 diabetes (T1D) prevention trial to be undertaken. A unique feature of TRIGR has been recruitment of eligible pregnant women and enrollment of newborns for long-term follow-up assessments. PURPOSE: Our purpose is to summarize the recruitment and retention strategies used to conduct TRIGR from the perspective of the study coordinators. METHODS: TRIGR was designed to test whether weaning to formula containing hydrolyzed versus intact cow's milk protein would be efficacious in decreasing risk for development of T1D-associated autoantibodies and T1D among infants identified to be at increased risk for T1D based on their human leukocyte antigen (HLA) profile and family history. Multiple strategies tailored to local issues were required to enroll and follow the target number of infants. RESULTS: This study was conducted in the United States, Canada, Australia, and 12 countries in Europe. Of the 5606 mothers registered worldwide, 5000 of their infants were randomized. Of these, 2159 were HLA eligible and enrolled in the 8-month intervention and 10-year follow-up phases of this study. The TRIGR study met the accrual goal after 4.7 years of recruitment, 2.7 years longer than projected initially. Challenges included difficulty in finding fathers with T1D, a higher than expected rate of premature delivery among T1D mothers, and implementation of new privacy regulations mid-trial. The majority of participants were recruited from primary care antenatal clinics located near the study centers and from a general hospital or pediatric center that was affiliated with a TRIGR Study center. Internet and magazine advertisements were found to be useful for recruitment of families. Alternative follow-up strategies are offered to families who wish to reduce or discontinue participation. LIMITATIONS: Our experience is limited to a single international multicenter trial. CONCLUSIONS: TRIGR coordinators played key roles in the recruitment and intervention periods and continue to be instrumental in retaining families and children during the 10-year follow-up period for each child.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Direct model labels (unvalidated)

Per-model category and study-design labels from the labeling rounds. They are machine output, unvalidated, and the disagreement between models ships as data. No study design here is MEDLINE-validated yet.

Model armCategoriesStudy designConfidence
gemmano category
Domain: not available · Genre: Empirical
About the Canadian research system: no · About a Canadian topic: no
Qualitativelow
gptMetaresearch
Domain: Methods · Genre: Empirical
About the Canadian research system: no · About a Canadian topic: no
Qualitativelow
models splitAgreement compares identical category sets and study designs across arms.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.003
metaresearch head score (Gemma)0.008
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Bench or experimental · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.375
Threshold uncertainty score0.982

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0030.008
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.386
GPT teacher head0.515
Teacher spread0.129 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Labeled directly by 2 models reading the full record.

Metaresearch

The models disagree on parts of this classification; every voice is preserved in the section at the end of the page.

Study designQualitative
DomainMethods
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations11
Published2013
Admission routes3
Has abstractyes

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