Participate in Research Studies
Help Find New Treatments For Angelman Syndrome
Are you interested in having your family or your individual with Angelman Syndrome participate in research studies? Studies may involve a phone interview, surveys or mailing of information. Some studies may require you to travel to other cities. Others may involve blood tests, EEG's and other medical procedures. You can participate in research through universities and medical centers throughout the country. As new studies become available the ASF will contact known AS families with the opportunity to participate. You may also register with the Rare Disease Clinical Research Network and participate in one of their study centers. Click here to register.
Decide Which Studies Interest You
You can decide the studies in which your family would be most interested. Researchers will contact a member of the Scientific Advisory Committee of the Angelman Syndrome Foundation to describe their research. The ASF will make these research opportunities known to you electronically via email, the ASF website or by written notice. You then have the choice of contacting the researchers and deciding if the research study is one in which you and your family would like to participate. Click on the lefthand links to find out more information on research studies currently enrolling participants.
Register with the RDCRN Patient Contact Registry
As one of 48 rare disorders represented in the Rare Disease Clinical Research Network (RDCRN) the Angelman Syndrome Foundation would like to encourage you to Get Involved! Take Action! Register with the RDCRN Patient Contact Registry for possible participation in clinical trials (research). Click here to register.