Volunteer for NIAID-funded clinical studies related to ALPS by going to ClinicalTrials.gov.
View a list of NIH investigators and their contact information.
The ALPS team is composed of doctors, scientists, nurses, genetic counselors, and several students and scientists in training. Physicians from around the country refer families suspected of having ALPS to the National Institutes of Health (NIH). The team reviews the medical records and blood samples of the families and invites those who are thought to have ALPS to NIH for evaluation and follow-up.
Researchers are trying to better understand this rare disease, to find the cause, and to uncover new ways to treat it. Of course, the ultimate goal is to find a cure.
There is a genetic component to ALPS, but the development of the disease in families with mutations in genes is not straightforward. For example, researchers want to know why some family members have an alteration in the Fas gene and no sign of ALPS. Other research questions may also be answered by studying family members. Therefore, NIH invites family members to join its studies by providing a small blood sample.
Those interested in participating will have a chance to discuss study details with NIH researchers. Each potential volunteer will be asked to read and sign a consent form.
All of the tests, evaluations, and treatments at NIH are free. Family members who participate will be helping us better understand and treat ALPS.
NIH is currently conducting research studies to evaluate the usefulness of PET scans to better understand the nature of lymph node and spleen enlargement in ALPS patients and to explore experimental treatments against the disorder.
For more information, or to volunteer for these studies, see ClinicalTrials.gov.
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Last Updated September 30, 2008