Read below to learn about the newest opportunities to participate in research at our center.
If you are interested in learning more about participating in these studies, please call the Penn FTD Center at 215-349-5863.
CReATe is a consortium study and the University of Pennsylvania is one of 15 recruiting sites. The name stands for Clinical Research in ALS and Related Disorders for Therapeutic Development, and we are enrolling participants under the Phenotype, Genotype, and Biomarkers in ALS and Related Disorders protocol.
The purpose of this study is to identify links that exist between patients’ symptoms and their genes, as well as the discovery of novel biomarkers that could aid in diagnosis and therapeutic development.
What it involves:
The study involves 5 visits over 18 months, which are planned around each participant’s visits to the Penn Comprehensive ALS Center. Each study visit includes clinical assessments, completed by the participant’s neurologist based on their exam, and some additional assessments that are completed at a visit to the Hospital of the University of Pennsylvania within a week or two of their clinic visit. The research day includes respiratory assessments, cognitive testing, and blood & urine collection, as well as an optional MRI and optional lumbar puncture. Participants will have the option to find out their genetic test results, and will have access to our genetics counselor for the disclosure and discussion of those results.
Laura Hennessy/ Phone: 215-349-5695/ Email address: Laura.Hennessy@uphs.upenn.edu
The Dementia with Lewy Bodies Consortium (DLBC) will evaluate more than 200 participants with DLB across multiple sites in the United States. DLB is the second most common form of neurodegenerative dementia in the elderly. Typical age of onset ranges from 50 to 85 but some cases have been reported much earlier. The disease presents with cognitive changes similar to Alzheimer’s and motor and behavioral changes similar to Parkinson’s, making it difficult to accurately diagnose. Furthermore, there are currently no approved drugs or treatments for DLB.
The ultimate goal of the DLBC is to discover a biomarker for DLB to improve diagnosis, care, and treatment of patients with this disease. The DLBC will systematically and longitudinally collect biofluids and imaging data from participants across sites to move towards this discovery. The DLBC’s readily available dataset will also promote additional future research, including clinical trials.
What it involves:
The DLBC plans to collect data from enrolled participants over a period of five years, starting from the baseline visit. Baseline and annual visits will involve a physical and neurological exam, lumbar puncture, blood draw, cognitive assessments, and caregiver questionnaires. In addition, the baseline and two-year visits will include a DaTscan and MRI scan. There is one six-month visit after the baseline visit that includes a medical exam, blood draw, brief cognitive assessment, and caregiver questionnaires. The DLBC plans to have a total of seven visits for each participant: baseline, six-month, one-year, two-year, three-year, four-year, and five-year.
Sophia Dominguez/ Phone: 215-662-6144/ Email: email@example.com