New Opportunities to Participate in the ITCH Study
Riley Hospital for Children and Seattle Children's Hospital are now open and enrolling for the ITCH study. This is a 13-week study of LUM001 versus placebo in children with ALGS who suffer from itching. Individuals who complete the ‘ITCH’ study will be able to enroll in a long-term study to receive LUM001. For more information on ITCH at Seattle and Riley, please search for LUM001 on www.clinicaltrials.gov.
Season of Giving
As we navigate this season of giving, please consider donating to the Alagille Syndrome Alliance. This has been an exciting year for our community and so many great plans are in the works for 2015. With your support we can make this happen! Here is a link to our online donation system: https://secure.acceptiva.com/?cst=773aff
Help Us Plan New Workshops and Forums
The ALGSA is planning new online workshops and forums that will provide relevant information, share new updates, and provide our community with an opportunity to connect in an online environment. Please take a few moments to rank your interests and share your ideas: https://www.surveymonkey.com/s/ALGSAOnline
Lumena/Shire 'ITCH' Study
The Lumena/Shire ‘ITCH’ study is now open! Dr. Nanda Kerkar at Children’s Hospital LA is enrolling patients. We will let you know as soon as other ChiLDReN Network centers open up. This is a 13-week study of LUM001 versus placebo in children with ALGS who suffer from itching. Everyone who completes the ‘ITCH’ study will be able to enroll in a long-term study where everyone will receive LUM001. For more information please search for LUM001 on www.clinicaltrials.gov. Another study of LUM001 called ‘ICONIC’ is enrolling patients in Vancouver (Canada), Madrid (Spain), Lyon and Paris (France), details can also be found on www.clinicaltrials.gov.
Symposium 2014 Video Available to View
In case you missed it, we have all the Symposium videos available to view on our YouTube channel. You can catch sessions you missed or watch the whole thing if you want to. Check them out here: ALGSA YouTube Channel
There’s power in numbers. Help us build our patient registry!
The ALGSA announces our own disease registry! We invite all ALGSers to join, to provide de-identified medical information to the registry to help everyone in the global ALGS community – patients, families, researchers, clinicians, and pharmaceutical companies – learn more about ALGS. The goal is improved diagnosis and medical care, as well as empowerment of patients and families through knowledge, connections, and support. If you have any questions about the ALGSA CONNECT registry, or to opt in, please contact us at alagille(at)alagille.org.
Join the ALGSA CONNECT registry