What is a Clinical Trial?
According to www.clinicaltrials.gov, a clinical study [trial] involves research using human volunteers (also called participants) that is intended to add to medical knowledge.
There are 2 types: observational studies and clinical trials. You can learn more about clinical trials and studies from these trusted sources:
Clinical Trials by Disease
Be The Match Jason Carter
Clinical Trials Search and Support
Clinical Trials Support
Are you an HLH or LCH patient or caregiver looking for help finding a clinical trial or paying for travel arrangements to participate in one? The Be The Match Jason Carter Clinical Trials Search and Support may be able to help! They offer travel grants to help get you to clinical trials and can help you navigate the process along the way.
Learn more at www.ctsearchsupport.org.
Registries & Gene Therapies
You've learned more about clinical trials and studies, but what about Registries and Gene Therapies? Our friends at the National Organization for Rare Disorders (NORD) explain all about registries, gene therapies and more in the videos below. Find more information and videos at www.rarediseases.org.
Learn more about the registries the Histiocytosis Association supports in our Grants Awarded directory.
Click an image below to view the video on NORD's YouTube channel.
Free Genomic Profiling
The Memorial Sloan Kettering Make-an-IMPACT Initiative is a rare-cancer global outreach initiative that provides free genomic profiling for patients with Langerhans Cell Histiocytosis (LCH), Erdheim-Chester Disease (ECD), Rosai-Dorfman Disease (RDD), Juvenile Xanthogranuloma (JXG), and Histiocytic Sarcoma (HS). Genomic profiling with world class, next-generation sequencing technology developed at Memorial Sloan Kettering Cancer Center aims to identify genetic mutations in these tumors. These tumors often harbor mutations in BRAF or related family of genes and may respond to drugs that target these genetic alterations. Patients who were diagnosed or treated for LCH, RDD, ECD, JX, or HS within 2 years with current active disease may be eligible to participate. If you would like to learn more, please visit the Make-an-IMPACT site or reach out to the Make-an-IMPACT team: MakeIMPACTrtm@mskcc.org. If you are eligible and would like to participate, please complete the volunteer form.