Help 4 HD International has created this registry to help enroll our international Huntington's community in research trials and studies.
What is the registry and why should I register myself or a loved one?
Each of us wants to see treatments or the cure for Huntington's disease. Without participating in vital trials and studies, our scientific
community will not be able to find the treatments or the cure. We have heard from many HD families who wish to participate in studies
or trials, however the process has been tiresome, or they are unaware of the process. The registry will allow you to participate in the
development of potential viable treatments or the cure for Huntington's disease. By registering, you are doing your part to make this
the last generation to suffer from Huntington's disease. Individuals who have been diagnosed with adult on-set of HD may register.
How did we create this registry?
We at Help 4 HD International have built many wonderful partnerships with our international research community. It is through these
relationships that we have been able to garner their support, asked their opinions, and compile their recommendations for this registry.
In addition, we have held many discussions among our HD families and peers, also utilizing their feedback and opinions. In result, we
have constructed a comprehensive, functional, international registry. After completing the registration process, your information will be
guarded by staff at Help 4 HD International. If in the event that you or a loved one meets specific criteria for a clinical research opportunity,
someone from Help 4 HD International may contact you (via telephone, regular mail, or email) and provide you with additional information.
At any time you or your loved one can opt-out and withdraw from the registry.
Is the registry process safe and secure?
We understand your concerns regarding privacy and security. Why? Because we are your peers and we understand the importance of
protecting personal information. We have utilized this registry for ourselves and our loved ones affected by Huntington's disease, so we
realize the need for privacy and security. Due to these concerns, we have taken all necessary procedures, precautions, and steps, to
safeguard all information collected. This international registry harnesses the most advanced and secure servers for safety and reliability!
It is imperative that we as an international community take the time to register ourselves or our loved ones affected by Huntington's disease.
Help 4 HD International will never share your personal information. Help 4 HD International believes that we can all work together, across
the globe, to assist and accelerate research for Huntington's disease. Together we will make a difference!
We are in the trenches with the people, because we ARE the people!
|Individuals who have been
diagnosed with the juvenile
form of Huntington's disease,
contact: Dr. Peg Nopoulos
of the University of Iowa
|© Copyright 2014 www.H4HDiRegister.org - Help 4 HD International Incorporated product and service. All rights reserved.
Help 4 HD International is pleased to have
worked closely with FARA to construct our
registry. Listen to the show!