Three years into a five-year program, one of the largest eczema research projects in the US still seeks patients, particularly blacks and Hispanics, to volunteer for studies that will link our DNA to our vulnerability to skin infection.
The Atopic Dermatitis Research Network will sequence the whole genomes of 2500 eczema patients and systematically correlate genetic variation with the severity of disease, types of skin infection, and immune status. ADRN scientists are also looking at how eczema may make certain types of vaccination less effective.
The ADRN, a consortium of six major health centers across the US, is led by Dr. Donald Leung, head of the Division of Pediatric Allergy and Immunology and National Jewish Health in Denver, Colorado. I spoke to Leung by phone on Monday, June 16.
“Biomarkers [obtained by the ADRN] will tell people whether you’re prone to getting infections, and what types,” Leung said. He also spoke briefly about therapies that might emerge from the project. “In atopic dermatitis, the skin barrier is bad, but we don’t know what makes [the skin’s immune response] bad. Certain cytokines [immune signaling molecules] make the barrier bad—for example, interleukin-13. If we know how IL-13 makes the barrier bad, we could make an antibody to it” and thereby protect the skin of eczema patients from infection, he said.
The ADRN is the successor to the Atopic Dermatitis Vaccinia Network, a bioterrorism-motivated program that brought together many of the same scientists in an effort to protect eczema patients from rare, dangerous infections caused by the smallpox vaccine.
In 2009, the ADRN, together with an associated federal contractor, won a $42 million contract from the National Institute of Allergy and Infectious Diseases to study skin infections caused by antibiotic-resistant Staphylococcus aureus and viruses such as herpes simplex and vaccinia. Eczema patients are prone to severe skin infections by these and other pathogens.
The ADRN comprises
- National Jewish Health
- Boston Children’s Hospital
- Children’s Hospital Los Angeles
- Northwestern University/ Ann & Robert H. Lurie Children's Hospital of Chicago
- Oregon Health and Science University
- University of Rochester Medical Center
“Each medical center has particular strengths,” Leung said, adding that the ADRN’s centralized structure makes it more efficient; “the centers can share, rather than compete.” No matter where in the US a patient may donate a sample, it will end up in the most appropriate studies.
I contacted Leung because I wanted to find out what ADRN had achieved in its first three years. If you search PubMed for papers citing the ADRN’s contract number, you get a total of 13. If you go to clinical trials.gov and search for “ADRN”, you get four trials, three of which involve 60 patients or fewer. Overall, the publically available information seems less than you’d expect for a $42 million project.
Leung explained that delayed gratification was the nature of a massive clinical effort. “We haven’t started churning out a lot of data,” he said. “In the first year, you develop protocols [the official plans for clinical trials, which must be approved by NIH], some of which can be over 100 pages. In the second year you collect patients and create a registry. In the third year you collect samples.”
He added that scientists were still publishing papers based on ADVN samples three years after funding for that program ended.
The ADRN’s studies need people with very well-characterized AD, Leung said. Although 2500 people may seem like a lot, that number is made up of people belonging to many different ethnic groups, such as Caucasians, African-Americans, and Hispanics. “Atopic dermatitis is not the same disease in all people,” he said. “Different racial groups have different types of bacterial flora. A black person may have low vitamin D because of different pigmentation. We haven’t done good studies yet” that make the differences clear.
Leung said that the ADRN had a good response so far from Caucasian patients but was short of African-American and Hispanic volunteers.
If you volunteer, he said, your DNA will be made anonymous. However, depending what study you enroll in and what samples you give, you may learn about your allergic status.
To join a study at an ADRN center near you, contact Judy Lairsmith at National Jewish Health or call 1-888-413-5852.
