Welcome To GRIN
Watch our animation video to learn more about GRIN!
Click each survey below to participate and accelerate research.
About The Natural History Study
This study is designed to document a CMT patient’s experience with their disease, and will create a profile that captures in-depth information on the patient’s disease type, diagnosis, functional challenges, experience with pain, quality of life and other issues associated with CMT.
By participating in the Natural History Study, you will be helping HNF see important trends within the CMT patient experience that will provide direction for future research and therapeutic development.
A completed Natural History Study profile may also make you eligible to participate in patient studies and clinical trials that could result in treatments for CMT disease.
By taking 10 minutes to complete this study, you will be making a lasting contribution to the better understanding of CMT disease and the CMT patient experience!
About The Respiratory Survey
Recently, respiratory dysfunction has become a recognized and more common symptom of CMT/IN. With this study, HNF will gather data to inform healthcare providers to better understand, diagnose and hopefully develop a standard of treatment for patients with this concerning symptom.
This survey is 5 to 13 questions long, depending on your answers, and will take about 5 minutes complete. Thank you for participating!
About The Cannabis Survey
HNF, in partnership Champlain Valley Dispensary, is conducting this medical cannabis survey for CMT/HNPP patients to determine if its use is beneficial. Questions concerning types, amounts, methods of consumption and utilization of prescription drugs will help inform researchers.
If you use cannabis to help provide relief from your CMT symptoms, please participate in this survey to help us better understand how cannabis plays a part your treatment regimen.
Encuesta en español
Parte de la misión de la Fundación de Neuropatía Hereditaria es representar las voces de todos los pacientes con CMT por igual, independientemente de su origen étnico, nacionalidad o condición socioeconómica.
Es por eso que iniciamos nuestra primera “Encuesta de voz de diversidad global” innovadora utilizando la tecnología de activación por voz (IVA) de última generación desarrollada por TrueReply.com.
Al capturar la experiencia del paciente con CMT en su propia voz y lengua materna, HNF espera mejorar el acceso y la participación de las poblaciones minoritarias desatendidas en proyectos de investigación clínica, y obtener una visión más profunda de la experiencia particular de estas poblaciones con la enfermedad de Charcot-Marie-Tooth.
Nuestra primera Encuesta Global de Voz de Diversidad involucrará a pacientes de habla hispana con 9 preguntas. Los participantes podrán hacer las preguntas libremente en su propia voz; Sus respuestas serán grabadas, transcritas y traducidas al inglés para su análisis e información.
Part of the Hereditary Neuropathy Foundation’s mission is to represent the voices of all CMT patients equally, regardless of ethnicity, nationality, or socio-economic status.
This why we are initiating our first ever, ground breaking “Global Diversity Voice Survey” using state of the art Voice Activation Technology (VAT) developed by TrueReply.com.
By capturing the patient experience with CMT in their own voice and native language, HNF hopes to improve access and participation for underserved minority populations in clinical research projects, and to gain deeper insights into these populations particular experience with Charcot-Marie-Tooth Disease.
Our first Global Diversity Voice Survey will engage Spanish speaking patients with 9 questions. Participants will be able to the questions freely in their own voice; their responses will be recorded, transcribed and translated to English for analysis and insights.
Without your participation, researchers won’t have the essential and necessary patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies!
Why should you join GRIN? It’s pretty simple…We need YOU!
As GRIN grows, we exponentially gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies. This is an incredible opportunity for you to participate in CMT and Inherited Neuropathies Patient-Focused Research.
Your vital data allows for researchers to study why individuals experience different symptoms and address what is most important to patients when thinking about drug development. Scientists can also learn how a particular mutation type may lead to different or unique symptoms helping us to develop treatments for all types of CMT and Inherited Neuropathies.
By completing your profile, your de-identified information will be utilized to advance research and support clinical trial designs. As a registrant, you will be informed when you may be eligible for clinical trials.
These Patient-Reported Outcomes Studies will enhance therapy development in collaboration with our industry partners. By informing Healthcare Providers and others with your critical data, we can work to improve diagnosis and enhance patient care.
Ready to Join?
Anyone diagnosed with CMT or other Inherited Neuropathies can join GRIN. Your information is always kept confidential: only approved research investigators and industry partners can see your de-identified information.
If you are already a participant, we still need you! It’s important to update your profile and participate in many of our Patient-Reported Outcomes Research Studies.
With all of the current positive research momentum, there is no better time than right now to join GRIN! Become a part of the effort to find the treatments and cures for all Inherited Neuropathies!