Access to Credible Genetics Resources Network (ATCG)
Finding accurate information on rare genetic disorders can be difficult for families faced with a new diagnosis. Healthcare providers also need quality information that will help them recognize genetic disorders and give appropriate care.
The goal of ATCG is to provide accurate information about rare genetic disorders for families and healthcare providers. Genetic Alliance and its partners will:
- Decide what kind of information families and healthcare providers need to make informed decisions about taking care of a person who has a rare disorder.
- Develop ways to decide if information on a rare disorder is accurate.
Read the Trust It or Trash It? tool Evaluation Report
ATCG is funded through a grant from the Centers for Disease Control and Prevention (CDC). Genetic Alliance and partners will build this Resource Network based on two rare disorders, Duchenne/Becker muscular dystrophy (DBMD) and fragile X syndrome (FXS). Methods developed to evaluate or create accurate information for these disorders can be used for other rare disorders and even more common, complex conditions.
If you would like more information or have questions about the Access to Credible Genetics Resources Network, please contact us.
Genetic Alliance’s partners in the project include:
- FRAXA Research Foundation
- Gene Tests
- National Coalition for Health Professional Education in Genetics
- National Council of La Raza
- National Fragile X Foundation
- Parent Project Muscular Dystrophy
- University of Maryland School of Medicine
A National Advisory Council and a Steering Committee provide continued guidance for this project.
ATCG operates under the following guiding principles:
- All of our work will be transparent and immediately available for others to use or comment on.
- We will use a transparent evaluation process to help others understand the process and weigh factors from their own perspective as needed.
- The field of evidence-based medicine will inform this project.
- We will examine and integrate models from other fields where possible.
- We will consult other projects and programs in information, genetics, resources, single gene disorders, common conditions, and genetic testing and screening and invite representatives of these programs to participate.
- The information assessment systems created will be patient-focused and replicable.
- Our results will be practical; they will not require that further research be conducted, nor will we wait to disseminate even preliminary findings, plans, and results.
This web page is supported by cooperative agreement #5U10DD525036-05 with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC). The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of CDC.