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UAB Survivorship Study and its impact so far

The following blog post is adapted from the April University of Alabama at Birmingham (UAB) newsletter for the Histiocytosis Survivorship Study participants. We figured many of you, who haven’t been a part of this, would be interested in our partnership with UAB.

You can currently join the study if you are English-Speaking (anywhere in the world) and have had any Langerhans based forms of histiocytosis (LCH, ECD, RDD, XG) for 2 or more years. You can also participate in the study on behalf of loved ones who are children or who have passed.

Dr. Goyal and the University of Alabama at Birmingham’s team of investigators have been collaborating with the Histiocytosis Association to conduct a research study to learn about the health of people with various histiocytic disorders (Langerhans cell histiocytosis, Erdheim-Chester disease, Rosai-Dorfman disease, etc). This study aims to understand the long-term health effects from the disease and its treatments. 

The study involves completion of a health-related survey you can complete from the comfort of your home. You may be eligible for a $25 gift card at completion of survey. Family members of deceased individuals are also eligible to participate in the study. 

This quarterly newsletter will update participants on the progress of the study so far.

As of 4/16/24

The HDSS aims to create a large cohort of individuals with histiocytosis (about 2000 participants) in order to define the biggest health problems that affect this population. Since launching the study in fall 2022, we have received 374 completed surveys to date. In order to obtain accurate results that are representative of the entire population, we are actively seeking more individuals affected by these disorders to participate in our study.

The most recent webinar for the Histiocytosis Follow-up Study was this past April, entitled: “Histiocytosis & Survivorship Working now, for the future of histiocytosis” 

The talk was hosted by Dr. Gaurav Goyal, Principal Investigator on the study.  In case you missed it or would like to view again or share, you can find the recorded webinar here.

With improvement in treatments of LCH, there is a growing population of LCH survivors or individuals living with LCH who may be at increased risk of long-term health problems due to the LCH, its treatments, or a combination of both. We recently conducted a national study using the Surveillance, Epidemiology, and End-Results SEER) database from the US that included 1,392 individuals with LCH (936 pediatric and 456 adult-onset LCH).

The goal of this study was to examine the risk of second cancers (after LCH) and define the causes of mortality in individuals with LCH. While it can be hard to hear about such information, it is absolutely critical to learn about long-term health issues because it can lead to efforts for early detection and preventing serious complications that may arise from it. In this study, we found that the 5 year survival for individuals with LCH was excellent (approaching 90% for adults and 97% for pediatric-onset LCH).

We also found that individuals with LCH were at a higher risk of developing second cancers in the future than the general population without histiocytosis. While the overall survival was excellent, we found that some of the leading causes of death included infections in pediatric LCH and second cancers in adult-onset LCH. Due to the lack of detailed data in Surveillance, Epidemiology, and End-Results SEER) database, we were unable to figure out the factors that would increase the risk of second cancers or other health complications, including the types of treatments received. Therefore, there is a need to conduct the Histiocytic Disorder Survivor Study to address these important questions and develop strategies to improve outcomes. 

Goyal G, Parikh R, Richman J, Abeykoon JP, Morlote D, Go RS, Bhatia S. Spectrum of second primary malignancies and cause-specific mortality in pediatric and adult langerhans cell histiocytosis. Leuk Res. 2023 Mar;126:107032. doi: 10.1016/j.leukres.2023.107032. Epub 2023 Feb 6. PMID: 36758375.

Caroline Cannon has been a member of the Histiocytic Disorder Survivorship Study team since August 2022. You may have heard her voice or received one of her many emails as she has reached out to you. She loves every chance she gets to speak to participants of the study. Getting to learn about histiocytosis has been an incredibly eye-opening experience for Caroline and she looks forward to delving further into this incredibly rare disease.

Born and raised in the state of Alabama, Caroline is passionate about patient-centered care and research. She received her Bachelor’s of Science from Samford University where she was a member of the Alpha Omicron Pi sorority. She enjoys getting to spend time outdoors, especially if involves going to the ballpark to watch baseball.

This study will help us better understand the health problems that people with histiocytic disorders suffer from.  This study will also identify people at risk for these complications in order to help personalize treatments and provide guidelines for monitoring in future. Findings from these studies will also help identify those that need to be followed more closely or those that need preventive measures to ensure a healthy life free of complications.

This study plans to enroll at least 2000 participants in order to get results that are reliable and applicable to the general histiocytosis population. Therefore, the study will likely take up to 5 years to complete enrollment.

Have a question? Submit your question to for consideration of inclusion in an upcoming newsletter!

Thank you for your dedication to driving forward research for histiocytic disorders. We look forward to continuing to share updates and outcomes with you. 

All the best from- The University of Alabama at Birmingham Study Team & Histiocytosis Association Team

You can find this and other studies and registries here on our clinical trials/registries page.