Neurogenetic Multidisciplinary Clinic
at Children’s Hospital of Colorado
For the first time, Project 8p has led the launch to change the model of how clinical care can be organized with data to inform research and potential therapies, while serving bedside for a standard of care that does not exist. In collaboration with other rare disease groups, the purpose of our the clinic is to serve patients and families affected by Chromosome 8p and related neurogenetic conditions. Our program’s goal is to provide world-class expertise and multi-disciplinary care to patients, through personalized care plans and access to cutting edge research to advance the care of these rare conditions.
Our services include consultation and evaluation for all people attending our clinic of all ages. Our expert providers ensure they are receiving the needed therapies, treatments, and services to support the best possible quality of life. We work to participate in natural history data collection and ground-breaking clinical research trials, collaborating with providers across the country and the world. Our hope is to work with families and their primary medical team to create a care plan that places the child’s needs at the center of care.
Watch Informational Session
Dr. Scott Demarest and Dr. Margarita Saenz (clinic co-directors), along with Tristen Dinkel (nurse coordinator) to learn what to expect from the Neurogenetics Multidisciplinary Clinic at Children’s Hospital Colorado.
Special Care Clinic
Families begin the day in Neurology clinic for cognitive assessments with our Neuropsychologist. Next, they see providers in the Special Care Clinic – a pediatrician with expertise in complex and chronic conditions and a pediatric-focused registered dietician. Finally, they are seen in our multi-disciplinary clinic space, with assessments by a Neurologist, Genetics, doctor of Rehabilitative medicine, and physical, occupational, and speech therapists. The nurse coordinator plans out the clinic day in advance and communicates with family to make sure the schedule for the day is clear and feasible for the child.
Families can prepare for what is a long day at the hospital by: bringing snacks and/or meals and feeding supplies, communication devices, orthotics and anything needed to get child comfortably through the day. Our goal is to help your child leave the day with a plan of care that streamlines and optimizes their medical and therapy cares. We recognize that this will be a long day, but we hope to bring together an expert team for your child’s rare condition, and efficiently offer you the best advice to improve your child’s quality of life. We anticipate most patients being seen once a year in multi-disciplinary clinic.
How to get scheduled?
Please contact us with your child’s name, birthdate, your preferred phone number, insurance card(s) and genetic testing results. Tristen Dinkel, Nurse Coordinator- Phone- 720-777-7453, Fax- Attn: 8P Clinic, Fax: 720-478-7103, email – BNDP@childrenscolorado.org