HDSA Center of Excellence at Northwestern University
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Northwestern Medicine This Month |
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NEW VIRTUAL SUPPORT GROUP PROGRAMMING. WE WILL CONTINUE TO OFFER MONTHLY VIRTUAL SUPPORT GROUPS ALTERNATING BETWEEN A GENERAL HD SUPPORT GROUP AND CAREGIVER SUPPORT GROUP
Northwestern Medicine Virtual Caregiver Support Group:
September 11, 10 am
Missed our event? Northwestern Medicine Virtual Education Series 2021
Managing Difficult Behaviors presented by Dr. Eric Gausche
Save the date: Education event and support group
Topic: HD Research and Panel discussion
Speaker: Dr. Danny Bega and research participants
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OUR HD TEAM IS EXPANDING
Northwestern Medicine continues to offer comprehensive care and management of Huntington’s Disease (HD) through our HDSA designated Center of Excellence. Starting August 2021, the HD clinic will expand and be offered more frequently, the 2nd, 3rd, 4th, & 5th Friday mornings of each month. New provider additions to the NM HD team include Dr. Danielle Larson, a Neurology-Board Certified Movement Disorders specialist, and Dr. Amy Corcoran, a Board-Certified Behavioral Neurologist & Neuropsychiatrist. These physicians will continue to collaborate with the center’s genetics counselor, social workers, dedicated neurology nurses and rehabilitation therapy team to care for HD patients.
Please welcome the new additions to our HD team:
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Dr. Danielle Larson completed medical school at Tufts University School of Medicine in Boston, MA prior to completing Neurology residency training at Northwestern. She is a Neurology-Board Certified Movement Disorders specialist, after completing Movement Disorders fellowship at Northwestern's Parkinson's Disease and Movement Disorders Center. Her clinic focus is seeing patients with Parkinson's disease, Huntington's disease, Tic Disorders and Tardive Dyskinesia as well as Essential Tremor and other types of tremor. Dr. Larson performs botulinum toxin injection treatments for Migraines, Blepharospasm, Hemifacial spasm, and Dystonia. In addition to her clinical work, she conducts Parkinson's disease and Huntington's disease research through involvement as an investigator on multicenter clinic trials, in community-engaged research for under-served Parkinson's disease populations, and on telemedicine utilization for Movement Disorders, specifically Huntington's disease. |
Dr. Amy Corcoran completed medical school and Psychiatry residency at the University of Illinois at Chicago. She completed a fellowship in Behavioral Neurology & Neuropsychiatry at Baylor University. She has been seeing Neuropsychiatric patients at Northwestern since 2017. She specializes in treating the cognitive, behavioral, and psychiatric sequelae of various neurologic illnesses like traumatic brain injury, Huntington's disease, Parkinson's disease, epilepsy, multiple sclerosis, COVID-19, strokes, autism spectrum disorders, intellectual disabilities, and developmental disorders.
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Research Recruitment
Hi-DEF Scale Study: NOW RECRUITING
Individuals with Huntington’s disease are invited to participate in the Hi-DEF Scale Study. The purpose of this study is to learn more about impact of Huntington’s disease on cognition and everyday functioning. The study involves a one-time commitment that lasts about 2.5-3 hours. Participants will be asked to complete some online questionnaires and two online cognitive tests. Once finished, the participant will be compensated for their time. If you’re interested in learning more about the study or how to get involved, please contact Destiny Gomez at 312-503-2778 or destiny.gomez@northwestern.edu.
PROOF-HD: NOW RECRUITING
Northwestern is excited to be participating in the PROOF-HD Study. This is a phase 3, randomized, placebo-controlled study evaluating the efficacy and safety of an oral drug called Pridopidine in patients with early-stage Huntington's disease. The objective is to see if Pridopidine can slow down functional decline in Huntington's disease when compared to a placebo pill. If you are interested in learning more about the study and how to get involved, please reach out to study coordinator ZsaZsa Brown at 312-503-4121.
KINECT-HD: Recruitment complete
This is a study for a new treatment for chorea associated with Huntington's disease. If you have chorea that is not currently being treated we need you. The study is of a medication called Valbenazine to treat chorea, and is being conducted by the Huntington Study Group and Neurocrine Biosciences. The study involves 9 visits and will last 18 weeks. There is the opportunity to stay on the drug after the first part of the study is over. Participants will be randomly selected to receive the drug or placebo at first. We are very excited to participate as one of several sites around the country. If you or someone you know is interested in taking part in KINECT-HD, please contact our study coordinator ZsaZsa Brown at 312-503-4121 or email zsazsa.brown@northwestern.edu.
KINECT - HD 2 Study: Recruitment complete
Northwestern Medicine will be participating in an open-label extension study of Kinect-HD. The purpose of this study is to continue to gather safety and efficacy data on Valbenizine for the treatment of Huntington's chorea, while also providing study subjects who participated in Kinect-HD continued access to the study drug. In this open-label study, all subjects are given Valbenazine, even if they received placebo during Kinect-HD. Kinect-HD 2 is open to research subjects who completed participation in Kinect-HD. For more information on Kinect-HD 2 contact Zsa Zsa Brown at 312-503-4121 or zsazsabrown@northwestern.edu
Telemedicine for Huntington's Clinical Care
Individuals with Huntington's disease are invited to participate in the study "TeleHD" to determine the feasibility and value of telemedicine visits for HD patients and their care partners. This research study is conducted by Dr. Danielle Larson and Dr. Danny Bega.
Who is Eligible?
- Have a diagnosis of Huntington’s Disease
- Ages 18 to 70
- Have a computer, laptop, tablet or phone with a camera, microphone, and internet access
- Fluent in English
What will you be asked to do?
- Complete two telemedicine visits (by camera at home) in addition to your two regular in-person Huntington’s Clinic visits over a 6-9 month time period.
- During the visits, a neurologic exam will be performed and you will complete two cognitive tests. The telemedicine visits will likely take less than 30 minutes.
- After each clinic visit, you will be asked to record the time and travel burden of your visit.
- After all of the visits, you will be asked to complete a survey about your satisfaction with telemedicine visits.
Northwestern Movement Disorders Center Biorepository
The Movement Disorders Center (MDC) Biorepository is a registry aimed to collect biologic and clinical information, such as blood and tissue samples, and family and medical histories from patients diagnosed with a movement disorder. The purpose of studying materials from the registry is to identify factors that either cause these neurologic conditions or increase one’s risk for developing them. Samples collected for this biorepository include a blood sample (or a saliva sample) and a skin biopsy. Participants may choose to donate one or both samples.
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Local Support Groups - Virtual
Northwestern Medicine HD Support Group:
We will be alternating between a general and caregiver support group. These meetings are held the second Saturday of every month from 10am-11:30. **Please note - for the Saturday education events, support groups will be held after.
For meeting invite, please email Emily: emily.zivin@northwestern.edu
Scheduled Dates:
September 11th: Caregiver support group
October 9th: General support group
November 13th: 10 AM
Education event and support group
Topic: HD Research and Panel discussion
Speaker: Dr. Danny Bega and research participants
Caregiver support group after the presentation
December 11: General support group
Education events sponsored by:
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HDSA offers 8 free phone therapy sessions for HD individuals families
Need support? Don't forget that the HDSA offered 8 free phone therapy sessions for families affected by HD. The sessions are provided by AmWell Telehealth and therapists have been educated on HD.
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HDSA online support groups
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HDSA Illinois chapter
SAVE THE DATE: NEW ONLINE QUARTERLY GROUP FOR INDIVIDUALS WHO ARE GENE POSITIVE:
Thursday, September 9th at 7PM
Contact person: Emily Zivin, ezivin@hdsa.org or 630-443-9876
Register in advance for this meeting:
Golf for HD: Sunday, September 12 at 12 PM
Location: Old Orchard Country Club
Join our extended family for an afternoon of golf supporting a cure for Huntington's Disease!
This will be a foursome scramble (using best ball, all players take all shots) with a shot gun start to speed up play. Players of all levels and ability are encouraged to participate. Prizes for lowest and highest foursome scores, women's and men's skill awards and a healthy amount of goofy awards for players who demonstrate unusual talents (aka, Sand Hole award for the player who consistently hits the bunkers)!
Illinois support groups:
Some support groups are moving back to in person. Please reach out to the support group leaders for more detailed information.
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National Youth Alliance
The NYA offers programming for individuals 12-29. In their upcoming miniseries, they will be talking about important topics and conversations during one hour-long session every other Saturday.
Upcoming dates for NYA miniseries:
9/4: Testing Positive
9/18: Being a Young Caregiver: Dealing with Symptoms at Home
10/2: Anxiety and Depression
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Ken and Ruth Davee Department of Neurology and Clinical
Neurological Sciences
Lavin Family Pavilion
259 E. Erie Suite 1900
Chicago, IL 60611
Phone: (312) 695-7950
Fax: (312) 695-5747
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