Registry for patients with Hemophagocytic Lymphohistiocytosis
INTO-HLH- Insight Into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis (HLH): A Disease Registry for Patients With HLH
This study is collecting information from patients with Hemophagocytic Lymphohistiocytosis to better understand the condition and improve future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Sex | All |
| Sponsor | Children's Hospital Medical Center, Cincinnati Academic / other |
| Locations | 1 site (Cincinnati, Ohio) |
| Trial ID | NCT05277272 on ClinicalTrials.gov |
What this trial studies
This observational study aims to collect comprehensive data on the natural history of Hemophagocytic Lymphohistiocytosis (HLH), including aspects such as diagnosis, treatment responses, and patient outcomes. The study seeks to address the significant gaps in understanding the clinical diversity and complications associated with HLH, particularly in North America. By establishing a robust registry, the collaboration between Cincinnati Children's Hospital Medical Center, Texas Children's Hospital, and Sobi Inc. will facilitate better insights into HLH and potentially guide future treatment strategies.
Who should consider this trial
Good fit: Ideal candidates for this study include patients with clinically suspected or confirmed HLH, including those meeting the HLH-2004 diagnostic criteria.
Not a fit: Patients who do not have clinically suspected or confirmed HLH will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could lead to improved understanding and management of HLH, ultimately enhancing patient outcomes.
How similar studies have performed: While there have been studies on HLH, this registry approach is novel in its comprehensive data collection focused on the North American population.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with clinically suspected or confirmed HLH, including those meeting the HLH-2004 diagnostic criteria (primary or secondary forms, including malignancy) and other forms of HLH (macrophage activation syndrome \[MAS\], cytokine release syndrome \[CRS\], etc.) * Signed and dated informed consent and assent (adolescents) Exclusion Criteria: * None
Where this trial is running
Cincinnati, Ohio
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (Recruiting)
Study contacts
- Study coordinator: Michael Jordan, MD
- Email: Michael.Jordan@cchmc.org
- Phone: (513) 803-9063
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.