Who We Are
What Is CANDID?
CANDID is a multidisciplinary collaboration of researchers, medical professionals, caregivers and patient advocacy groups who recognize the growing needs of families struggling to understand and manage gastrointestinal issues in their loved ones. We first came together in 2021 with the ultimate goal of improving GI care for people with neurodevelopmental disorders.
Individuals with neurodevelopmental disorders may experience a level of GI dysfunction that significantly impacts their overall quality of life, and can sometimes even be life-threatening. We often hear stories from families who are disheartened by the lack of currently available resources, and struggle with when pervasive and disruptive GI symptoms are dismissed as “just part of the NDD.” It can be difficult to find a GI clinician who is trained to address the unique needs of those with NDDs, and families often experience lengthy diagnostic processes that can include misdiagnosis and painful, sometimes ineffective interventions.
By working together in collaboration, CANDID hopes to start bridging the gaps between stakeholders and enable more sharing of knowledge across disciplines and experiences. We want family members to be informed about the latest science and research, and researchers and doctors to understand the experiences and needs of families. Our goal is to learn from one another and to advocate for more research funding in this important area.
In June 2022, we took our first public step towards this goal with our CANDID virtual meeting. This meeting was partially funded by NIH and organized with the support of Indiana University and advocacy organizations like the Autism Science Foundation, Phelan-McDermid Syndrome Foundation, Alliance for Genetic Etiologies of Neurodevelopmental Disorders and Autism (AGENDA), and the International Foundation for CDKL5 Research. We brought together researchers and doctors who are leaders in fields like gastroenterology and neurology, and heard from families who live with the daily struggle of managing severe GI symptoms in their loved ones.
Did you miss the meeting?
You can watch all of the presentations here on candidgi.com, or on our YouTube channel.
We also designed and disseminated a survey to better understand the severity and scope of GI issues in those with rare genetic diseases. The results of this survey (as well as the valuable feedback from families who participated) will be used to identify areas of need and inform future research. Check out Dr. Billy Bennett’s presentation on the survey results!
Our next steps are to delve more deeply into issues which will support the wider scientific and caregiving audience. These include (but may not be limited to):
1. Better measures to understand GI issues
2. Training for pediatric gastroenterologists so they know more about how to help those with NDDs
3. How shared data and biorepository resources can accelerate research.
This website is intended to be a way to keep updated on any CANDID activities as well as a call to get involved for organizations. We hope to include resources for scientists as well as families. We would eventually like to offer more scientific articles, recommendations, funding announcements and videos of other relevant talks, as well as sharing research participation opportunities for families with NDDs and GI dysfunction.
If you have suggestions, ideas, or comments – we want to hear from you! This journey is just beginning, and we value your feedback.
info@candidgi.com
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