Long Term Follow Up Study

With the advances in treatments of histiocytic neoplasms, there is a growing population of survivors of these rare disorders who may be at risk of long-term health problems related to the treatments received. These health problems can lead to increased healthcare needs, pain, psychological health effects, and reduced quality of life. However, due to the rarity of these disorders, there is a lack of studies that can help counsel patients in the clinic about what to expect in the long-term and how to reduce the risk of health problems in the future.

In fall of 2022, Dr. Goyal and team partnered with the Histiocytosis Association and the Erdheim-Chester Disease Global Alliance to launch a national study, the Histiocytic Disorder Follow-up Study, aimed at addressing these critical questions. The study participants are asked to complete a survey about their health since the diagnosis of histiocytosis, and receive a gift card in appreciation of their time. Loved ones of patients who have passed away are also able to participate to provide a sense of health conditions in the years before death. The survey can be completed from the comfort of home, either online, on paper, or via telephone. This is the largest study of its kind with a target of 2,000 participants in order to achieve results that are actionable for the community.

We anticipate that the results from our study will help develop guidelines to counsel patients in the clinic about what to expect in the long-term, what tests to undertake for monitoring of the disease, and define the risk factors that can cause health problems. Eventually, our results will lead to a survivorship program for individuals with histiocytosis, with interventions targeted toward reducing long-term complications and improving quality of life.