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In 2020 we have worked hard on developing and expanding committees and programs that will help provide guidance and resources for families affected by Dup15q Syndrome. As we turn the corner into 2021, we are committed to expand on research in Dup15q Syndrome and continue our search for targeted treatments. Participation from our Dup15q Alliance patient community is imperative for success.
Over $240,000 budgeted for research in 2021.
2020 – Developing a Community Needs Assessment Survey
- community participation is critical.
GOAL: Identify critical family needs to drive research and clinical trials to improve quality of life for those affected by Dup15q Syndrome.
- Database that will collect information from Dup15q families about all symptoms, diagnosis & medications.
- Rolled out in categories.
- Community participation is critical to develop a full picture of Dup15q Syndrome symptoms.
GOAL: By linking multiple sources of information LADDER can expand research and accelerate the development of interventions and treatments for individuals with Dup15q and their families.
Future Clinical Trials
- Dup15q Alliance is working towards bringing more clinical trials to the community.
- Launching a Clinical Trial Readiness initiative.
- Dup15q Alliance vets all possible trials for safety before bringing them to our Dup15q Alliance families.
GOAL: Finding targeted Treatments for the various symptoms of Dup15q Syndrome.
Evaluating Genetic Diagnosis Research
- Questionnaire to identify the missing pieces in diagnosing and genetic knowledge provided at Dup15q Syndrome diagnosis.
GOAL: To strengthen the information provided at diagnosis and genetic counseling.
- call for overnight EEG’s to be submitted for research
GOAL: Look at EEGs over time and see if we can pinpoint early markers for seizure risk or brain function changes that are related to behavior.
Together We Achieve; Together We Believe