Improving access to genomic research for rare diseases in underrepresented populations
Advancing Equity in Rare Disease Genomics
['FUNDING_OTHER'] · BOSTON CHILDREN'S HOSPITAL · NIH-11135905
This study is all about finding ways to get more people from underrepresented groups involved in research about rare diseases, so we can better understand their needs and make sure everyone has equal access to the benefits of genomic medicine.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | BOSTON CHILDREN'S HOSPITAL (nih funded) |
| Locations | 1 site (BOSTON, UNITED STATES) |
| Trial ID | NIH-11135905 on ClinicalTrials.gov |
What this research studies
This research aims to enhance participation of minoritized populations in genomic research related to rare diseases. It will identify barriers and facilitators to engagement through interviews with participants and healthcare providers. The study will develop a toolkit to promote diversity, equity, and inclusion in genomic research, and evaluate its effectiveness using a mixed-methods approach. By addressing these gaps, the project seeks to ensure equitable access to genomic medicine services.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals from minoritized populations who are affected by rare diseases.
Not a fit: Patients who are not from minoritized backgrounds or who do not have rare diseases may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to more equitable access to genomic diagnostics and therapies for rare diseases among underrepresented populations.
How similar studies have performed: Other research has shown success in improving participation of underrepresented groups in clinical studies, indicating that this approach has potential.
Where this research is happening
BOSTON, UNITED STATES
- BOSTON CHILDREN'S HOSPITAL — BOSTON, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: WOJCIK, MONICA HSIUNG — BOSTON CHILDREN'S HOSPITAL
- Study coordinator: WOJCIK, MONICA HSIUNG
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.