Egypt launches major study to track rare genetic disorder NF1
NCT ID NCT07221331
First seen Jun 27, 2026 · Last updated Sep 11, 2026 · Updated 3 times
Summary
This study is a disease registry that will collect information from 200 people in Egypt who have neurofibromatosis type 1 (NF1), a genetic condition that causes tumors to grow on nerves. The goal is to understand how the disease progresses over time, what treatments patients receive, and how it affects their daily lives. No new treatments are being tested; instead, researchers will review medical records to learn more about NF1 in the Egyptian population.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 200 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Nov 2025
- Expected to finish
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Sep 2026
An estimate. End dates often move.
- Lead sponsor
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A company
The lead sponsor is a pharmaceutical, biotech, or medical-device company.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Patients' records will be eligible for study inclusion if the NF1 diagnosis date is between 01-Jan-2010 and 31-Dec-2023.
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: A. Male or female patients of any age at index date (first diagnosis of NF1 and/or PN). B. Have been diagnosed with NF1 according to the NIH Consensus Development Conference diagnostic criteria or the revised criteria between 01-Jan- 2010 and 31-December-2023. Exclusion Criteria: A. Missing NF1 diagnosis data in their medical record.
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Get notified about this study
Sign up to get updates when this study changes or when new studies for Neurofibromatosis type 1 are added.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
9 sites. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Research Site
RECRUITINGAl Mansurah, Egypt
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Research Site
RECRUITINGAlexandria, Egypt
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Research Site
RECRUITINGAswān, Egypt
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Research Site
NOT_YET_RECRUITINGAsyut, Egypt
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Research Site
RECRUITINGCairo, Egypt
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Research Site
NOT_YET_RECRUITINGCairo, Egypt
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Research Site
NOT_YET_RECRUITINGSohag, Egypt
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Research Site
RECRUITINGTanta, Egypt
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Research Site
NOT_YET_RECRUITINGZagazig, Egypt
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Real-World study tracks Selumetinib's impact on NF1 tumors in children
- Could a cholesterol drug boost reading skills in kids with NF1?
- Antioxidant drug shows promise for kids with NF1
- Can a simple walk test spot motor trouble in kids with NF1?
- New drug aims to help kids with rare genetic short stature grow taller
- New study tracks Long-Term safety of NF1 drug in kids