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Medical Record Review of Hypohidrotic Ectodermal Dysplasia Clinical Phenotype (ECP-006)

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ClinicalTrials.gov Identifier: NCT01398397
Recruitment Status : Completed
First Posted : July 20, 2011
Last Update Posted : June 28, 2012
Sponsor:
Collaborator:
National Foundation of Ectodermal Dysplasia
Information provided by (Responsible Party):
Edimer Pharmaceuticals

Study Description
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Brief Summary:
This study is being done to collect information about people who have or may have Hypohidrotic Ectodermal Dysplasia (HED) or X-linked Hypohidrotic Ectodermal Dysplasia (XLHED). This study will allow Edimer Pharmaceuticals to know more about HED/XLHED so that hopefully the investigators can develop a drug to treat this condition. In this study Edimer will retrospectively review and abstract (summarize) medical records of people that have or may have HED/XLHED in order to further understand the natural history and disease characteristics.

Condition or disease
Hypohidrotic Ectodermal Dysplasia X-Linked Hypohidrotic Ectodermal Dysplasia

Study Design
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Study Type : Observational
Actual Enrollment : 11 participants
Observational Model: Case-Only
Time Perspective: Retrospective
Official Title: Medical Record Review of Hypohidrotic Ectodermal Dysplasia Clinical Phenotype
Study Start Date : April 2011

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Groups and Cohorts
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Outcome Measures
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Eligibility Criteria
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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
The study will enroll up to fifty HED/XLHED affected individuals.
Criteria

Inclusion Criteria:

-Males or females with:

  1. the clinical characteristics of HED, including at least two of the following characteristics: a history of decreased sweating;abnormal teeth (fewer permanent teeth, teeth are smaller than average and often have conical crowns);sparseness of scalp and body hair.

    -OR-

  2. genetically confirmed HED or XLHED;
Contacts and Locations
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Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01398397


Locations
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United States, Massachusetts
Edimer Pharmaceuticals
Cambridge, Massachusetts, United States, 02142
Sponsors and Collaborators
Edimer Pharmaceuticals
National Foundation of Ectodermal Dysplasia
More Information
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Responsible Party: Edimer Pharmaceuticals
ClinicalTrials.gov Identifier: NCT01398397    
Other Study ID Numbers: ECP-006
First Posted: July 20, 2011    Key Record Dates
Last Update Posted: June 28, 2012
Last Verified: June 2012
Keywords provided by Edimer Pharmaceuticals:
HED
XLHED
X-linked Hypohidrotic Ectodermal Dysplasia (XLHED)
Additional relevant MeSH terms:
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Ectodermal Dysplasia
Ectodermal Dysplasia 1, Anhidrotic
Hyperplasia
Pathologic Processes
Abnormalities, Multiple
Congenital Abnormalities
 Skin Abnormalities
Skin Diseases, Genetic
Genetic Diseases, Inborn
Skin Diseases
Genetic Diseases, X-Linked