Due to lack of information on trials in
a particular location or area and many doctors being unaware of trials that are
being held locally, there is often a shortage of volunteers. A lack of suitable
volunteers generally means that trials take longer to complete, resulting in
new treatments taking a considerable time to become available.
Things to consider
before participating in a trial
Before participating in any
trial it is important to find out as much information as possible and to
discuss your potential participation with your doctor. He or she will be able
to advise on the advantages and disadvantages in your own particular situation,
and they may be able to refer you to other members of the multidisciplinary
team who have more knowledge about a particular area of research.
Why should I participate?
There are many benefits to taking part in a
trial. Some people are keen to be
involved as they feel that by doing so they can play a more active role in
their health and can help scientists find new medications or move closer to a
cure. It is worth noting that it is
because people in the past have participated in trials that current therapies
are now approved and more widely available.
People may feel that by contributing to
scientific research they are helping others.
They may also be able to access expert care at various centres of
healthcare excellence and take advantage of research treatments before they
become widely available. Participation
can also provide opportunities to learn
more about Parkinson’s and to meet others in a similar situation.
How do I find the right trial for me?
There are many trials running at any one time
on a range of potential Parkinson’s treatments.
Some may run only in a particular country, while others may span many
countries. Finding the right trial for you
will require time and patience so don’t be put off if you don’t find a suitable
trial straight away.
A good place to start is by asking your
doctor or neurologist if they are aware of any trials in your area. It may also be helpful to ask family members,
other people you know who have participated in trials before and your nearest
Parkinson’s support group.
You can also enquire at local research
centres as they may have a database of current trials. Your doctor’s surgery, local library or the
Internet should be good sources of information on research centres. If there is a research centre in your area,
try calling the neurology department and ask to speak to someone involved in
Parkinson’s trial recruitment. You may not
manage to speak to the right person first time but keep trying.
The list of trials is constantly
changing but the following websites may be helpful in researching current
trials that may be of interest to you:
It is a good idea to record all of the
trials and contacts you pursue and the responses you receive. If you enquire about a trial and you are
unsuitable or they are no longer recruiting, ask the coordinator to keep in
touch regarding future trials which may be more appropriate.
And if you are initially unable to join
a trial which interests you, don’t be discouraged from enquiring about others
as new ones are regularly launched and need a broad range of participants.
Once
you have found a trial you are interested in check the criteria for
participation. If you think you are suitable
contact the trial coordinator and ask for more detailed information and raise
any particular queries you may have.
You will need to establish whether they are currently enrolling people
and if so you may be asked to attend a screening appointment before
being accepted. Some medical tests may
be performed both to establish your fitness for the trial and so that
comparisons on aspects of your health can be made for both before and after
treatment. If for any reason you don’t
enrol, do ask the coordinator to keep you informed about further trials.
The following list should help you to
find out essential information from the trial coordinator so that you and your
doctor are well informed when discussing your possible participation. It may be helpful to take a member of your
family or a friend with you if you have a meeting with the trial coordinator so
that they can take notes.
-
What is the purpose of the trial?
-
How long is the trial expected to last?
-
What tests have so far been conducted, if any, into the
efficacy and safety of the treatment? How can I access results of previous
investigations?
-
Why do researchers believe that the treatment will be
as or more effective than my current treatment?
-
How many hours will my involvement take and how long
will I be involved?
-
When will I start?
-
Will I be asked to sign any contracts regarding my
involvement?
-
What are my responsibilities as a participant?
-
How will I know if the treatment is working?
-
Is the treatment likely to make me feel unwell or
uncomfortable and if so, for how long?
-
What experimental treatments or tests will be carried
out?
-
Where will these be carried out, will hospital stays be
required and if so how frequently and for how long?
-
Will I be expected to attend any meetings and if so how
many and for how long?
-
How will the treatment affect daily life and quality of
life?
-
Will I be able to take other medications or
over-the-counter treatments?
-
What are the perceived risks, benefits and possible
side effects in comparison to my current treatment?
-
What long term follow up will be required?
-
Who will monitor my treatment, care and safety during
the trial?
-
Will someone keep my doctor informed of progress?
-
Is there someone I can contact on the research team if
I have any queries?
-
Who will pay for the treatment and will my expenses be
reimbursed?
-
If my symptoms improve during the trial, will I be
permitted to continue using the new treatment once the trial has ended,
and before it is registered?
- If I become unwell or develop symptoms related to the
trial treatment, will I be entitled to medical care and how will this be
handled?
Be
prepared to keep notes in order to track changes to your symptoms, either using
forms provided by the trial coordinator or your own notebook or Parkinson’s
diary. Written notes are always helpful for
remembering specific details when reporting back to the research team.
For
a checklist booklet with a wide range of questions to ask before joining a
trial see PD Trials ‘Participating in Parkinson’s Clinical Research: Questions to Ask’
