GRIN registry data access

GRIN, the Global Registry for Inherited Neuropathies, is the only IRB-approved, patient-led global registry for Charcot-Marie-Tooth disease. It pairs genetic data with patient-reported outcomes and validated clinical measures, captured over time, to give researchers and industry the real-world evidence that drug development and clinical trials depend on.

As of July 2026.

6,000+participants

65+gene mutations

72+countries

4languages

4,282+specimens

Since 2013Established 2013, relaunched April 2023.

IRB-approvedStudies run under IRB approval; FDA-recognized data.

De-identifiedGDPR- and HIPAA-compliant, de-identified by design.

GlobalParticipants across dozens of countries and subtypes.

What GRIN captures

GRIN’s CMT-specific surveys are complemented by NIH-funded ClinGen “head to toe” surveys, so a request arrives with the genetic, clinical, and lived-experience context that makes the data usable. The registry holds, per consented participant:

Genotype & phenotype Confirmed CMT subtype correlated to signs and symptoms.

Signs & symptoms Patient-reported symptom burden across body systems.

Mobility & function Activities of daily living, function, and assistive-device use.

Age of onset Onset, diagnosis history, and disease milestones.

Validated measures Baseline scores on validated CMT and ClinGen instruments.

EMG / NCV & EHR Clinical test results and electronic health record data.

Longitudinal data Repeat measures over time, the basis of natural history.

Trial interest Each registrant’s stated level of interest in trial participation.

What you can request

GRIN exists to serve research that moves CMT toward treatments. Academic and industry teams draw on it to understand a subtype, validate that patients would engage with an investigational drug, design preclinical and clinical studies, and recruit efficiently when a trial opens.

IRB-valid datasets scoped to your research question
Consented patient cohorts for an upcoming clinical trial
Subtype-specific cohorts to study a particular inherited neuropathy
Participants willing to provide blood, skin fibroblasts, and other biospecimens
Real-world evidence to design preclinical (in-vivo) studies
Endpoint and outcome-measure data to support trial design

How access works

1 Define the question Tell us the subtype, data, or cohort you need and the purpose, research, clinical trial, or regulatory submission.
2 Scope a request HNF’s registry team scopes a dataset or cohort against what GRIN holds and the relevant IRB-approved studies.
3 Advisory review Requests are reviewed to ensure they advance the science and respect participant consent.
4 Receive de-identified data Approved teams receive de-identified data, or are connected to consented participants, for their study.

Doing those natural history studies provides all the information about what you need to measure, how often you can measure it, what is tolerated by your community...

Lucas Kempf, MD, former Acting Director, Rare Disease Program, FDA

What did the FDA have to say about HNF’s approach to preparing for CMT clinical trials with natural history studies? Watch this three-minute video from HNF’s 2018 PFDD meeting.

Request data access

Tell us about your study and what you need from GRIN. HNF’s registry team will follow up to scope a dataset or cohort and walk you through the review process.

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Frequently asked questions

Who can request data from GRIN?

GRIN data access is for qualified academic and industry researchers working to advance CMT science. Requests are scoped against what the registry holds and the relevant IRB-approved studies, then reviewed to confirm the work advances the science and respects participant consent.

What kind of data does GRIN hold?

Per consented participant, GRIN holds confirmed genotype and phenotype, patient-reported signs and symptoms, mobility and function, age of onset and disease milestones, baseline scores on validated CMT and ClinGen instruments, EMG/NCV and electronic health record data, longitudinal repeat measures, and each registrant’s stated interest in trial participation.

Is GRIN data de-identified and compliant?

Yes. GRIN is structured to be de-identified by design and is GDPR- and HIPAA-compliant, using a de-identified CRID. Studies run under IRB approval, and the data is the kind regulators recognize.

What makes GRIN different from other CMT registries?

Contact and consortium registries for CMT exist. GRIN is distinct as the only IRB-approved, patient-led global registry for the condition: structured natural history data, consented and de-identified, that regulators recognize. It launched in 2013 and relaunched in April 2023.

Can GRIN help with patient recruitment for a trial?

Yes. GRIN lets a trial team estimate prevalence and subtype distribution, size a cohort against real numbers, and identify and reach trial-ready patients in a defined subtype population. Many participants have signalled their interest in trial participation.

Living with CMT and want your data to count? Join GRIN → Every participant strengthens the evidence behind the next trial.