Tracking and improving follow-up care for adrenal gland disorders in newborns
ALD Healthy Planet Project
This study is working on a new system to help make sure that newborns diagnosed with X-linked adrenoleukodystrophy (ALD) get the right care and check-ups on time, so they can stay healthy and get the support they need.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project ID | NIH-10851183 on NIH RePORTER |
What this research studies
This research focuses on X-linked adrenoleukodystrophy (ALD), a serious genetic disorder affecting the adrenal glands and brain. It aims to develop an automated system to ensure that newborns diagnosed with ALD receive timely and appropriate follow-up care, including necessary testing and monitoring. By collaborating with multiple children's hospitals, the project seeks to enhance the tracking of patients and improve adherence to recommended health services. The approach involves leveraging existing technology to create a comprehensive monitoring dashboard for healthcare providers.
Who could benefit from this research
Good fit: Ideal candidates for this research are newborns diagnosed with X-linked adrenoleukodystrophy or related adrenal insufficiency conditions.
Not a fit: Patients with adrenal disorders not related to X-linked adrenoleukodystrophy may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes for newborns with adrenal gland disorders by ensuring they receive timely interventions.
How similar studies have performed: Previous research has shown success in developing automated tracking systems for other rare diseases, indicating potential for this approach in ALD.
Where this research is happening
Philadelphia, United States
- Children's Hosp of Philadelphia — Philadelphia, United States (Active)
Researchers
- Principal investigator: Vanderver, Adeline Lucie — Children's Hosp of Philadelphia
- Study coordinator: Vanderver, Adeline Lucie
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.