Providing information and support for genetic and rare diseases.
MANAGEMENT AND RESEARCH SUPPORT FOR THE GENETIC AND RARE DISEASES (GARD) INFORMATION CENTER AND RELATED PROGRAMS
This study is all about how the Genetic and Rare Diseases Information Center helps people with genetic and rare diseases by providing easy access to helpful information in English and Spanish, so patients, families, and healthcare professionals can get the support they need.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Project ID | NIH-11216122 on NIH RePORTER |
What this research studies
The Genetic and Rare Diseases Information Center (GARD) offers a vital resource for individuals seeking information about genetic and rare diseases. This center provides 24/7 access to knowledgeable information specialists who can assist patients, families, and healthcare professionals in finding accurate and current information in both English and Spanish. GARD has handled over 15,500 inquiries, supporting not only patients but also healthcare providers, researchers, and advocacy groups in their quest for knowledge about rare diseases. This initiative aims to enhance understanding and awareness of genetic conditions, ultimately improving patient care and support.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals and families affected by genetic or rare diseases, as well as healthcare professionals seeking information.
Not a fit: Patients who do not have a genetic or rare disease may not receive direct benefits from this research.
Why it matters
Potential benefit: If successful, this research could significantly improve access to critical information for patients and families affected by genetic and rare diseases.
How similar studies have performed: Similar initiatives have successfully provided valuable information and support to patients and families, indicating a strong precedent for the effectiveness of such programs.
Where this research is happening
Columbia, United States
Researchers
- Principal investigator: Milstead, Kerry
- Study coordinator: Milstead, Kerry
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.