A Single Center Pilot Study to Assess the Intra-observer Reliability of Measuring Muscle Strength Using a Hand Held Dynamometer in Children and Adults With Neurofibromatosis Type 1 (NF1) and Type 2 (NF2)
| Status: | Recruiting |
|---|---|
| Conditions: | Other Indications |
| Therapuetic Areas: | Other |
| Healthy: | No |
| Age Range: | 5 - Any |
| Updated: | 10/17/2018 |
| Start Date: | September 24, 2018 |
| End Date: | September 9, 2019 |
| Contact: | Anna Yaffe |
| Email: | anna.yaffe@nyulangone.org |
| Phone: | 212-263-9945 |
A Single Center Pilot Study to Assess the Intra-observer Reliability of Measuring Muscle Strength Using a Hand Held Dynamometer in Children and Adults With Neurofibromatosis Type 1 (NF1) and Type 2 (NF2).
Patients with clinically confirmed neurofibromatosis type 1 (NF1) or neurofibromatosis type 2
(NF2) or a known neurofibromatosis (NF) mutation aged 5 years and above will be eligible to
participate and will be recruited from the neurofibromatosis clinic. Given the need for
identifying measures that can reliably and sensitively measure focal muscle weakness and
allow for measuring muscle strength as a functional outcome in therapeutic clinical trials in
NF, this pilot study will assess the reliability of measuring muscle strength in NF1 and NF2
using a hand-held dynamometer.
(NF2) or a known neurofibromatosis (NF) mutation aged 5 years and above will be eligible to
participate and will be recruited from the neurofibromatosis clinic. Given the need for
identifying measures that can reliably and sensitively measure focal muscle weakness and
allow for measuring muscle strength as a functional outcome in therapeutic clinical trials in
NF, this pilot study will assess the reliability of measuring muscle strength in NF1 and NF2
using a hand-held dynamometer.
Inclusion Criteria:
- For cohort 1:
- Patients must have clinically confirmed NF1 using the NIH consensus criteria or a
known NF1 mutation
- Ages 5 years and above
- < 5/5 strength on Manual Muscle Testing (MMT) testing in at least one muscle
group tested on the day of enrollment
- Able to follow instructions and cooperate with exam to assess strength
- For Cohort 2
- Patients must have clinically (NIH or Manchester criteria) or genetically
confirmed diagnosis of NF2
- Ages 5 years and above
- < 5/5 strength on MMT testing in at least one muscle group tested on the day of
enrollment
- Able to follow instructions and cooperate with exam to assess strength
Exclusion Criteria:
- No orthopedic procedure or other major surgery that could influence extremity strength
in past 6 months
- No tibial dysplasia
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