PATIENTS & FAMILIES
The INTO-HLH Registry is a patient registry for people diagnosed with hemophagocytic lymphohistiocytosis (HLH) in North America.
INTO-HLH is a collaborative effort with Cincinnati Children's Hospital Medical Center (CCHMC), Texas Children’s Hospital, and Sobi North America as the industry sponsor. We are planning to include other sites in this collaboration.
What is the INTO-HLH Registry?
An electronic database designed to collect information about HLH and its treatments. Information is collected from participants' medical records and routine clinical care.
The Registry aims to advance what is known about HLH. The insights obtained from this Registry will help doctors to better manage HLH in the future.
What are the objectives of the INTO-HLH Registry?
- Understand more about how HLH progresses over time, including its symptoms and impact on patients' quality of life
- Investigate how patients respond to treatments and what are the corresponding outcomes
- Learn more about the long-term complications experienced by patients with HLH and the general well-being of patients and caregivers
What will taking part in the INTO-HLH Registry involve?
- The INTO-HLH Registry will collect data (also called "medical information") from the participants' medical records and their routine clinical care over a period of five years
- This information will include the progression of the condition, its symptoms and treatments, and the outcome of the treatment
- The Registry will also collect information on how HLH impacts patients' daily life and long-term outcomes
Your or Your Loved One's Participation Could Make a Difference
By sharing your or your loved one's data, you will be contributing towards advancing what is known about HLH
Insights generated by the Registry may help to identify unmet needs in HLH and treatment outcomes for future patients
Our daughter, Audrey, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) on November 12th, 2015, only 11 days after her first birthday. After A LOT of bloodwork, it was determined that Audrey had “primary” HLH meaning she had inherited the disease from my husband, Adam, and I and that there had been a “trigger” (virus, illness, etc.) that caused the HLH to suddenly begin attacking her little body. In other words, Audrey’s immune system had been sent into overdrive and was going to kill her if something wasn’t done quickly. We were told that Audrey would need chemotherapy, heavy steroids (plus lots of other medications) as well as a bone marrow transplant to survive. The news was absolutely devastating.
Audrey followed the 8-week HLH protocol at our home clinic and hospital in Northern VA, but we knew that when it came time for the actual bone marrow transplant, we wanted to be in Cincinnati with some of the best HLH doctors in the World. We received news on Christmas Eve that they had found a PERFECT bone marrow match for Audrey so, on January 4th, we packed our bags and relocated our family to the Ronald McDonald House of Greater Cincinnati. And, on February 25th, under the direct care of Dr. Michael Jordan, Audrey received her life-saving bone marrow transplant. Audrey spent 35-days inpatient at Cincinnati Children’s Hospital, she was put on protective isolation for 103 days and on June 6th, 2016, Audrey was discharged and allowed to return to our home in Virginia.
We just celebrated Audrey’s 7-year transplant anniversary and we are happy to report that Audrey is a smart, kind, thriving little girl. In her spare time Audrey likes to ride her pony, Molly, she is on two swim teams that compete year-round, and she enjoys reading and writing. We still return to Cincinnati Children’s Hospital once a year for check-ups with her hematologist, but Audrey is no longer on any medications, she no longer requires occupational or physical therapy, and she is a happy and healthy kiddo!
*This is one patient's experience, and that individual experiences may vary.
Finding out that you or your loved one have HLH can be overwhelming. But, the good news is that you are not alone. These organizations can provide you with helpful information and support.
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.
Eric's Journey Foundation was created by Amanda and her husband Eric, who was diagnosed with HLH and Still's disease shortly after their marriage. Their organization is dedicated to raising awareness about HLH and other histiocytic disorders and supporting patients, families, and friends dealing with these diseases.
You can visit their website or Facebook page to learn more about the charity events they host and read about Eric's journey on his blog.
The Histiocytosis Association provides helpful information to patients and families dealing with primary HLH. It offers podcasts, webinars, videos, and more to help explain the condition. The association can also help connect patients with doctors who have experience treating primary HLH.
The Histiocytosis Association of Canada is dedicated to improving the lives of Canadians affected by histiocytosis. We are focused on public and professional education, patient and family support, and stimulation of support of research. We are an international group of parents, patients, physicians and friends in search of a cure. We work closely with an international group of physicians, known as the Histiocyte Society, who are dedicated to studying the histiocytoses. Through this partnership, more has been learned and better treatments have been discovered.
HLH Heroes Foundation is a new foundation created to provide support to individuals and families impacted by HLH. This organization was created by family members and caregivers of HLH warriors and angels to build a strong support network for those in need. You can learn more about HLH Heroes Foundation by visiting their Facebook page.
Liam's Lighthouse Foundation (LLF) was founded in memory of a 1-year-old boy who lost his life to HLH. His mother launched the foundation to increase awareness of HLH and other similar conditions.
LLF hosts charity events to raise funds for research and education at medical centers. The LLF website provides an overview of HLH. It also links to information about stem cell donations, fundraising, and more.
A non-profit foundation devoted to advancing science and supporting patients with SJIA (Systemic Juvenile Idiopathic Arthritis) and MAS (Macrophage Activation Syndrome). We support patients through education about latest scientific findings, new treatments and clinical trials. We advance research via seed grants to researchers. Recently we started a research network for the study of refractory SJIA patients which includes some of the top hospitals in the USA.