Preparing 4 a

Clinical research is the only way to

find treatments or the ultimate goal Clinical Trial
of a cure. Help 4 HD would like to
thank you for participating in these
An easy guide to follow
trials and helping us all advance our leading up to your trial day
future in care.

What is a clinical
trial?
To find a clinical trial go to:
Clinicaltrials.gov
Or
HDSA TrialFinder
Clinical trials are research studies
that explore whether a medical strat-
egy, treatment, or device is safe and
effective for humans. These studies
also may show which medical ap-
proaches work best for certain
illnesses or groups of people. • What is a clinical trial?
• Coercion Statement
COERCION STATEMENT • Checklist
Please remember that trials are
voluntary and up to the participants • Questions to consider
and their families. Help 4 HD sup-
ports your choice and knows that it Help 4 HD International Inc. • The day of your clinical
is a very personal decision. 5050 Laguna Blvd. 112 543
Elk Grove, CA 95758
trial...
www.help4hd.org

MINIMAL DISCUSSION: when helping
someone with HD participate in a trial,
try to avoid too much discussion the
night before to prevent unnecessary
stress/perseveration.
ACTIVITY: try watching a favorite mov-
ie, playing a board game, or doing an-
other favorite calm activity the night
before to help the participant feel at
ease.
REVIEW: talk to your coordinator
frequently with any and all questions.
Request and review the informed
consent in case you have questions.
Review your plan the day before if
possible.
PAPERS: print out directions to the
clinic, parking instructions, medica-
tions lists, etc.
OPEN COMMUNICATION: remember
that if you have any questions or con-
cerns, talk to the clinical trial coordi-
nator. They are there to help you with
anything you need. Being a part of a
clinical trial is a big decision. Make
sure you and your care partner are
supported through the whole process.
Some questions you may want to ask before a
clinical trial:
• What is the purpose of this clinical trial?
• How long will the trial last?
• How much time out of my life will it take to
participate in the clinical trial?
• Does this trial involve a placebo?
• What are the chances of me getting a placebo?
• Will there be reimbursement for expenses?
• What are the exclusions to be in the trial?
• What will happen if I qualify to be in the trial?
• What are all the expectations and require-
ments of my participation?
• Do I have to be tested positive for HD to par-
ticipate?
The Day of Your Clinical Trial…
. . . for both Caregiver and Patient
BRING ALONG:
 Snacks
 Favorite drinks (thickener & straw if needed)
 Entertainment (i.e. DVD player or cards)
 Change of clothes (keep weather in mind)
 Briefs/wipes
 Medications
 Pillow/light blanket
 Phone chargers
 D.M.E. (walker, wheel chair etc.)
• What type of intervention/hospitalization will happen
during the trial?
• Do I need a care partner to participate in the trial?
• Is there a drug extension offered after the trial?
• What precautions are put in place in case I have a reac-
tion during this trial?
• Will you have to follow me after the trial is over?
• Does being in the trial exclude me from other trials?
• Is there a contact for me during the trial for any ques-
tions or concerns that come up?
TIPS:
 Leave early for the trial time. If you are
stressed about arriving late, both you and
your loved one will have a much more chal-
lenging day. This is especially important if it
is your first time visiting the clinic for this
study.
 Eat a full breakfast (unless asked to fast).
 If you are not bringing along your medica-
tions, do print out a list of all medications,
including vitamins and over-the-counter
medications and supplements.
 Both caregiver/patient should wear com-
fortable clothing and shoes, as it will be a
long day.