The Global ALagille Alliance (GALA) Study

Published on January 18, 2024

The Global ALagille Alliance (GALA) Study is a global initiative to create an international database of clinical, genetic, and laboratory data in children and young adults with Alagille Syndrome (ALGS). The GALA study is led by Principal investigator, Dr. Binita M Kamath. a paediatric hepatologist and senior associate scientist at The Hospital for Sick Children (SickKids) at the University of Toronto, Ontario, Canada, in partnership with the Alagille Syndrome Alliance (ALGSA).

The GALA Study is composed of more than 100 physicians, surgeons scientists, and research coordinators from more than 30 countries around the world. The GALA database differs from a traditional patient registry in that only approved, and verified sites may submit patient data. The GALA Study does not accept medical records from patients directly. If you are interested in contributing your child’s or your own medical records please refer your physician to The GALA Data Coordinating Centre (DCC) Team.

P

9 Resource

By: Angelica Bottaro

Angelica Bottaro is a professional freelance writer with over 5 years of experience. She has been educated in both psychology and journalism, and her dual education has given her the research and writing skills needed to deliver sound and engaging content in the health space.

Important Links

Visit the GALA Study website, here: https://www.galastudy.com/

Connect with the GALA Data Coordinating Centre (DCC) Team, here: https://www.galastudy.com/participating-centres

More News

Donate Online

Applications open in early January and close in late April each year with award announcements in mid-May. Application materials will be available here each January for the academic year starting with fall term of each year.

In February 2015, the Alagille Syndrome Alliance (ALGSA) established the Alaina K Hahn Celebratory Scholarship in honor of Alaina K. Hahn, the daughter of Cindy Luxhoj, ALGSA Founder. Alaina was born September 30, 1990, with Alagille Syndrome and was the inspiration for the creation of the Alagille Syndrome Alliance. She passed away September 30, 1990, due to complications with Alagille Syndrome on January 15, 2015, when she was only 24 years old.

The Alaina K Hahn Celebratory Scholarship fund the education of high school graduates or GED credentialed recipients with Alagille Syndrome who are entering or enrolled in an accredited US university, college or vocational school and choose to pursue higher education in the human biological, medical, or health sciences field. The scholarship award is $1,000 for a single year and is renewable for a second year, subject to open competition with other applicants, for a total possible award of $2,000.

Alaina cared deeply about other children and adults who battle Alagille Syndrome. She talked, texted, and emailed her many ALGS friends daily and was constantly sharing advice and experiences with parents and patients through social media. She lived and breathed this disease, but never let it limit or define her.

A graduate in Human Physiology from the University of Oregon, Alaina was pursuing certification in Orthotics and Prosthetics with plans to obtain a Masters in O & P from the University of Washington when she died. This scholarship honors Alaina’s legacy.