Long-Term Follow-Up Cares and Check Initiative: A Program to Advance Long-Term Follow-Up in Newborns Identified with a Disease through Newborn Screening
Abstract
:1. Introduction
2. Methods
2.1. Use Case
2.2. Program Goals
- Engage parents and families living with newborns, children, and adults with SMA to identify LTFU themes to prioritize for SMA;
- Design, implement, and evaluate data collection with input from at least five pediatric neurologists caring for NBS-identified SMA cases;
- Connect the clinical site with their respective state NBS program to foster LTFU collaboration;
- Design, implement, and evaluate data dashboards designed for clinical sites and state NBS programs;
- Design and disseminate LTFU data points that are important for the LTFU of SMA to all state NBS programs in the US;
- Increase the number of infants, children, and families who receive coordinated LTFU care through a medical home by 20 percent from baseline.
2.3. Workflow
- Recruitment of Sites
- Website
- Clinical Sites
- State NBS Programs
- 2.
- Tool Design
- Literature Review
- Family Prioritization of Data Points
- Consultation with Clinicians
- LTFU-Cares Using REDCap®
- LTFU-Check
- 3.
- Data Collection using LTFU-Cares
- 4.
- Data Dissemination with LTFU-Cares Dashboard
- 5.
- Project Evaluation
3. Preliminary Results
3.1. Recruitment of Sites
3.1.1. Website
3.1.2. Clinical Sites
3.1.3. State NBS Programs
3.2. Tool Design
3.2.1. Parent and Family Engagement
3.2.2. LTFU-Cares Data Collection
3.2.3. LTFU-Cares Data Dashboard
4. Discussion
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Lietsch, M.; Chan, K.; Taylor, J.; Lee, B.H.; Ciafaloni, E.; Kwon, J.M.; Waldrop, M.A.; Butterfield, R.J.; Rathore, G.; Veerapandiyan, A.; et al. Long-Term Follow-Up Cares and Check Initiative: A Program to Advance Long-Term Follow-Up in Newborns Identified with a Disease through Newborn Screening. Int. J. Neonatal Screen. 2024, 10, 34. https://doi.org/10.3390/ijns10020034
Lietsch M, Chan K, Taylor J, Lee BH, Ciafaloni E, Kwon JM, Waldrop MA, Butterfield RJ, Rathore G, Veerapandiyan A, et al. Long-Term Follow-Up Cares and Check Initiative: A Program to Advance Long-Term Follow-Up in Newborns Identified with a Disease through Newborn Screening. International Journal of Neonatal Screening. 2024; 10(2):34. https://doi.org/10.3390/ijns10020034
Chicago/Turabian StyleLietsch, Mei, Kee Chan, Jennifer Taylor, Bo Hoon Lee, Emma Ciafaloni, Jennifer M. Kwon, Megan A. Waldrop, Russell J. Butterfield, Geetanjali Rathore, Aravindhan Veerapandiyan, and et al. 2024. "Long-Term Follow-Up Cares and Check Initiative: A Program to Advance Long-Term Follow-Up in Newborns Identified with a Disease through Newborn Screening" International Journal of Neonatal Screening 10, no. 2: 34. https://doi.org/10.3390/ijns10020034