RECRUITING

Albright Hereditary Osteodystrophy: Natural History, Growth, and Cognitive/Behavioral Assessments

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

We, the researchers, are following the natural history of Albright hereditary osteodystrophy. We have found that growth hormone deficiency is very common in patients with pseudohypoparathyroidism type 1A, which falls under the broader condition termed Albright hereditary osteodystrophy. Patients with pseudohypoparathyroidism type 1A typically are short and obese. Some of these patients are not short during childhood, but due to a combination of factors, they end up short as adults. We are evaluating the effect of growth hormone treatment in those patients with pseudohypoparathyroidism type 1A who are found to be growth hormone deficient (under R01 FD002568, IND 67148, which ended); those who are growth hormone sufficient and were found to have a positive clinical response to growth hormone in a prior clinical trial (under R01 FD00FD003409, IND 67148, which ended); or those who meet the criteria of idiopathic short stature or SGA. We are also evaluating neurocognitive and psychosocial functioning in participants with AHO in order to determine the specific impairments that are most common in the condition and to determine the best approach toward management. Funding source -- Growth hormone study: FDA OOPD \[R01 FD003409 (which has ended) and R01 FD002568 (which has ended)\] Cognitive/behavior: NICHD R21 HD078864 (which has ended)

Official Title

Natural History Study of Albright Hereditary Osteodystrophy: Includes Substudies on Effects of Growth Hormone in Patients With Pseudohypoparathyroidism Type 1A and Cognitive & Behavioral Studies in Albright Hereditary Osteodystrophy

Quick Facts

Study Start:2003-01
Study Completion:2030-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT00209235

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:2 Months to 89 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Emily L Germain-Lee, MD
CONTACT
860-837-6719
egermain@connecticutchildrens.org

Principal Investigator

Emily L Germain-Lee, MD
PRINCIPAL_INVESTIGATOR
Connecticut Children's Medical Ctr. and Univ. of Connecticut School of Medicine

Study Locations (Sites)

Connecticut Children's Medical Center
Hartford, Connecticut, 06103
United States

Collaborators and Investigators

Sponsor: Connecticut Children's Medical Center

  • Emily L Germain-Lee, MD, PRINCIPAL_INVESTIGATOR, Connecticut Children's Medical Ctr. and Univ. of Connecticut School of Medicine

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2003-01
Study Completion Date2030-12

Study Record Updates

Study Start Date2003-01
Study Completion Date2030-12

Terms related to this study

Keywords Provided by Researchers

  • Pseudohypoparathyroidism Type 1A (PHP 1A)
  • Albright Hereditary Osteodystrophy (AHO)
  • Pseudopseudohypoparathyroidism (PPHP)
  • Growth Hormone Deficiency
  • Cognition and Behavior

Additional Relevant MeSH Terms

  • Pseudohypoparathyroidism Type 1A
  • Albright Hereditary Osteodystrophy
  • Pseudopseudohypoparathyroidism