COHORT

I have been apart of this study for five years now. It is good. I am doing it in Calgary.

There is a Huntington’s Disease Study actively recruiting participants in many areas, including your own. (Please see the list of sites and appropriate contact information at the end of this email). It is called COHORT. The following is a brief description of the study, the qualifications needed to participate, and contact information to learn more or to volunteer to participate in the study. COHORT Cooperative Huntington’s Observational Research Trial Study Purpose: COHORT is a long-term observational study that currently involves 42 North American and Australian HSG sites. The goal of COHORT is to collect clinical information to learn more about the natural history of HD and to correlate these findings with the genetic and hereditary information that are obtained from the analysis of blood DNA and family history patterns. This knowledge will contribute to a better understanding of potential treatments, and will assist in the planning of future research studies of experimental drugs aimed at postponing the onset or slowing the progression of HD. COHORT is recruiting both adults and children who have clinically diagnosed HD. In addition, the study is also recruiting any adults who are a part of an HD family. Individuals who choose to participate will have one study visit every year for as long as they are able and choose to participate.Locations: Forty-two Huntington Study Group (HSG) research centers in the U.S., Canada and Australia (see list and contact information below)Participants Needed: As Many as possibleIndividuals 18 years of age and older who have HD or tested positive for the HD gene; Parents, children and siblings of individuals who have HD or have tested positive for the HD gene; Grandparents and grandchildren of those individuals participating in COHORT who have HD or tested positive for the gene; Spouses of those individuals who have HD or tested positive for the gene; and HD family members who have tested negative for the HD gene – these individuals must have a family member who has HD or tested positive for the gene participating in COHORT to be included.For those under the age of 18, only individuals who have HD are eligible to participate.Trial Duration: OngoingTesting Procedures: • If you participate you will have a blood sample taken from a vein in your arm at each visit, and a urine sample taken at either the 2nd, 3rd or 4th yearly visit.• Your blood and urine will be stored at the Coriell Institute for Medical Research indefinitely. The blood will be frozen and stored for future research in Huntington’s Disease. The samples are kept with anonymous codes so there is no way they can be attributed to you by name, address or any other information You may decide at any time that you no longer want your samples stored and they will be destroyed immediately. • You will not receive the results of any of the tests performed in this study.• If you have participated in other HSG studies you will be asked if the information collected in that study may be linked to the information in the COHORT study. This is optional.For more details please call one of the participating sites and tell them you hard about the study from HDTrials.org:

COHORT Participating Site List (last updated February 4, 2009)

The United States of America Location Site Name Contact Person Telephone No. AL,

Birmingham University of Alabama at Birmingham Donna Pendley 205-996-7865 CA,

Los Angeles University of California Los Angeles Angelina Gratiano 310-206-2154 or or Sakena Patterson 310-794-1225 CA,

Sacramento University of California Davis Roxana Hupcey 916-734-6244 or or John Bautista 916-734-6280 CA,

San Diego University of California, San Diego Jody Goldstein 858-622-5854 CO,

Littleton Colorado Neurological Institute Dawn Miracle 303-783-4974 or or Diane Erickson 303-762-6674 CT,

Farmington University of Connecticut Mary Jane Fitzpatrick 860-679-4441 FL,

Miami University of Miami Monica Quesada 305-243-3647 FL, Tampa University of South

Florida Marcia McCall 813-974-6022 GA,

Atlanta Emory University Lisa Miyatake 404-728-6364 GA,

Augusta Medical College of Georgia Sherry Banks 706-721-2798 or Buff Dill 706-721-0619 IA,

Iowa City University of Iowa Anne Leserman 319-353-4307 IL,

Chicago Rush University Medical Center Jeana Jaglin 312-942-5003 IL,

Chicago University of Chicago Joan Young 773-834-1688 IN,

Indianapolis Indiana University School of Medicine Melissa Wesson 317-278-9545 KS,

Kansas City University of Kansas Janice Broyles 913-588-0683 or or Hilary Dubinsky 913-945-5019 KS,

Wichita Hereditary Neurological Disease Centre (HNDC) Greg Suter 316-721-9250 or 888-232-4632 MA,

Boston Boston University Melissa Diggin 617-638-7704 MA,

Boston Massachusetts General Hospital Alex Bender 617-724-2227 or or Keith Malarick 617-726-5486 MD,

Baltimore Johns Hopkins University Claire Welsh 410-955-1349 MD,

Baltimore University of Maryland School of Medicine Allison Mitchell 407-706-5386 MO,

St. Louis Washington University School of Medicine Stacey Barton 314-362-3471 MN,

Minneapolis Hennepin County Medical Center Dawn Radtke 612-873-2943 NC,

Durham Duke University Medical Center Peggy Perry-Trice 919-684-0865 or or Sarah Wyne 919-668-2837 NC,

Winston Salem Wake Forest University School of Medicine Christine O'Neill 336-716-8611 NY,

Albany Albany Medical College Sharon Evans 518-262-6611 NY,

New York Columbia University Ronda Clouse 212-305-2387 or or Paula Wesserman 212-305-4597 NY,

Rochester University of Rochester Amy Chesire 585-341-7519 OH, Cincinnati University of

Cincinnati Maureen Gartner 513-558-0018 or or Mary Beth Bialick 513-558-0018 OH,

Columbus Ohio State University Allison Seward 614-688-8672 PA,

Philadelphia University of Pennsylvania Lisa Altin 215-829-3582 PA,

Pittsburgh University of Pittsburgh Nancy Lucarelli 412-692-4659 TX,

Houston Baylor College of Medicine Alicia Palao 713-798-3974 TN,

Memphis University of Tennessee Joel Dennhardt 901-448-6180 VA,

Charlottesville University of Virginia Robert Davis 434-982-4351

Canada Location Site Name Contact Person Telephone No. Alberta, Calgary University of Calgary Mary Lou Klimek 403-210-8548

British Columbia, Vancouver University of British Columbia Allison Coleman 604-822-7739

Ontario, Markham The Centre for Addiction and Mental Health Alanna Sheinberg 905-472-

7082 EXT 230 or or Adam Singer 905-472-7082 EXT 229 Quebec, Montreal Hotel-Dieu Hospital-

CHIM Daniel Lamoureux 514-412-8000 EXT 26394