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The following are links to websites that provide an introductions to clinical studies and trials: what they are, how they work, and the services they provide.
The following are links to websites that provide listings and search capability for clinical studies and trials.
NEEDS ASSESSEMENT IN PEDIATRIC GROWTH AND ADULT GROWTH HORMONE DISORDERS: YOUR EXPERIENCE OF CARE
AXDEV Group and The Endocrine Society invite you to participate in a needs assessment in the areas of pediatric growth and adult growth hormone disorders.
If you or someone in your family is directly affected by a growth or growth hormone disorder, this study is an opportunity for you, as a patient or caregiver, to share your experiences in receiving care and counseling from health care providers, and to have an impact on physicians’ continuing medical education. The goal is to obtain a more comprehensive understanding of the clinical challenges and educational needs of endocrinologists and of primary care pediatricians in screening, testing, diagnosing, treating, and managing growth and growth hormone disorders.
The study:
• Involves a 45-minute telephone interview about your experience of care
• Has been reviewed by an independent board to ensure that it respects the confidentiality as well as the right and welfare of participants
• Provides a financial compensation of $50.00 for participants’ time and commitment
For more details or to register to this study, please call AXDEV at 1-888-282-9338 (toll-free) (Confidentiality respected) or log on to: http://www.axdevsurveys.com/survey/370703/142d/
UNC is currently seeking participants for two studies of early brain development in Turner syndrome (TS). These studies have been expanded to include girls with any TS karyotype except for those who have a Y chromosome component.
Study 1. The purpose of this research study is to learn about brain development in children with TS beginning at two weeks of age. We are interested in whether the size of certain brain structures can tell us something about a child’s development. Your child will have a magnetic resonance imaging (MRI) scan of the brain in the first month of life at the University of North Carolina at Chapel Hill. An MRI does not use X-rays or radiation. All children will be scanned while sleeping naturally. Your child will also receive a thorough assessment of their behavioral development and a complete physical examination. Children will be invited back for similar follow-up assessments at 6, 12 and 24 months of age. If you were unable to participate in the initial assessment at 2 weeks of life, you may still be eligible to participate.
Study 2. Most children with TS have early growth failure and are treated with growth hormone. The purpose of this research study is to learn what effect growth hormone (GH) has on early brain development in children with TS. Girls will enter the study at 12 months of age and undergo an MRI, behavioral and physical examinations (as in study #1). They will be randomized into two groups: one group will receive GH for the following year while the other group will not (the control group). At 24 months of age, the subjects will return to Chapel Hill for repeat testing. Girls who did not receive GH during the study, will be given GH free of charge for the following year.
There will be no cost to families for participating in either study. The MRI, developmental evaluations, physical examination and GH are free of charge. Air travel and hotel arrangements will be made by research staff. If you travel by car we will reimburse you for the mileage.
To learn more about this study, please call: Dr. Marsha Davenport at 919-966-4435 x 232 or visit our website at http:www.turnersyndromestudygroup.org. (Posted Arpil 18, 2011)
TURNER SYNDROME STUDY (FOR 16 TO 24 YEAR-OLD WOMEN WITH TURNER SYNDROME: EARLY BRAIN DEVELOPMENT
This is a research study involving the transitioning experiences of 16 to 24 year-old women with Turner Syndrome. This study will provide information on what these young women experience as they manage issues that are important to them during this time of change in their lives.
Any woman with Turner syndrome who are 16 to 24 years old is eligibile to participate in this study provided that she can read and write the English language, understands the purpose of the study, and is willing to answer questions in a personal interview by an experienced endocrine endocrine nurse; and to share her personal story.
For more information, please contact the principal investigator, Kelly Behm, RN, Rush University, College of Nursing: (407)455-4986 or (kelly_behm@rush.edu. (Posted January 10, 2011)
ESTROGEN DOSING IN TURNER SYNDROME: PHARMACOLOGY AND METABOLISM
This is a research study on the choices of type, dose, and route of delivery of estrogen that are suitable in feminizing and sustaining estrogen concentrations in young women with Turner syndrome (TS). The focus of the study is TS girls who have already achieved their maximal growth, and who are not on growth hormone replacement therapy.
Turner Syndrome is a common chromosomal condition that affects only girls in which there is profound growth retardation and ovarian failure. TS girls need growth hormone for growth and estrogen replacement commencing in their teenage years and beyond.
The study encompasses two different protocols involving TS girls between the ages of 13 to 20 whom have been off growth hormone replacement therapy for at least 6 months. In protocol # 1, each girl will be ramdomly assigned estrogenic preparations to address the pharmacologic characteristics of each of these compounds. The results of that protocol will be compared in girls matched for similar age. This protocol will last 6 weeks.
In protocol # 2, TS girls will be randomly assigned to oral or transdermal estrogen and they will receive treatment for 12 months; they will also be treated with progesterone to mimic the normal female cycle. In this protocol the long term effects of estrogen on body composition, hormones, protein and fat metabolism will be addressed. Estrogen doses will be adjusted throughout the study depending on its concentration
The use of these compounds in this situation is not considered investigational. The cost of all these studies and study medications will be free of charge to the families who participate. To help offset their out-of-pocket costs involved with the study, those families will be paid $400 for their participation in protocol # 1 and $350 for their participation in protocol # 2.
If interested, please contact: Martha Taboada, MD, study coordinator (mtaboada@nemours.org) at 904-858-3944 or 800 SOS KIDS, ext. 55-3944, Nelly Mauras, MD, principal investigator (nmauras@nemours.org) or Judith Ross, MD, Co-Investigator (jlross@nemours.org).
FOR SOON-TO-BE-BORN AND NEWBORNS WITH TURNER SYNDROME: INVITATION TO PARTICIPATE IN A RESEARCH STUDY OF EARLY BRAIN DEVELOPMENT
The purpose of this research study is to learn about early brain development in children with Turner Syndrome. We are interested in whether the size of certain brain structures can tell us something about a child’s development. Your child will have a magnetic resonance imaging (MRI) scan of the brain in the first month of life at the University of North Carolina at Chapel Hill. An MRI does not use X-rays or radiation.
There will be no cost to families for participating. The MRI is free of charge and air travel and hotel arrangements will be made by research staff. If you travel by car we will reimburse you for the mileage. Clinical evaluations can be scheduled on the same day with Dr. Marsha Davenport, a pediatric endocrinologist who is an expert in Turner syndrome, and Dr. Maria Escolar, a pediatrician who is an expert in neurodevelopment. To learn more about this study, please call:
Dr. Marsha Davenport at 919-966-4435 x 232 or
Dr. Maria Escolar at 919-966-4465
(Posted June 13, 2008)
TREATMENT OF IDIOPATHIC SHORT STATURE IN CHILDREN (STUDY): Schneider Children’s Hospital is looking for pediatric volunteers to participate in a research study involving a drug for treating Idiopathic short stature (ISS) in Children who don’t grow to a height within the normal range but are otherwise physically normal. You may be eligible to participate in this study if you: Children age 3-9 for females and age 3-10 for males. You may not participate in this study if you: Have a chronic disease
Are pregnant
Have participated in another research study within the last 30 days
For more information,
Kathy Brunner, Study Coordinator,
Biomedical Research Alliance of New York,
Schneider Children’s Hospital,
400 Lakeville Road, Suite 180,
New Hyde Park, NY 11042,
Telephone: 718-470-3290,
Fax: 718-470-4565,
Email:
kbrunner@lij.edu (Posted January 12, 2008.)
Growth Hormone Insufficiency (Study): For children with growth hormone insufficiency are asked to participate in a research study being conducted by Montefiore Medical Center. Your child may be eligible to participate in this study if he/she (1) is between the ages of 3 and 11, and has been diagnosed with growth hormone insufficiency. Your child may not participate in this study if he/she has diabetes or has taken anabolic steroids. Contact Susan Wesoly, Study Coordinator,
Biomedical Research Aliance of New York,
Montefiore Medical Center,
Division of Pediatric Endocrinology,
111 East 210th Street,
Bronx, NY 10467,
Telephone: 718-920-4090.
Fax: 718-405-5609,
Email:
swesoly@msn.com. Massachusetts General Hospital. (Posted January 12, 2008.)
PREVALENCE AN METABOLIC CONSEQUENCES OF GROWTH HORMONE DEFICIENCY IN ABDOMINAL OBESITY OVERWEIGHT? (LARGE WAIST (STUDY): If you are 18-55 years old and are over weight with a large waist size, you may qualify for a metabolism research study.
Participants will receive: 2 outpatient visits (4-6 hours each) for blood draws and radiological studies; physical exam; evaluation of growth hormone level; evaluation of your risk of heart disease and of how your body processes sugar; and $100 compensation after completion of the study.
Please call: Hideo Makimura, M.D., Ph.D.
(617) 726-8277. (Posted January 12, 2008.)
Precocious Pubety Marketing Study on the Current Status and Future Direction of the Precocious Market Marketplace: GfK V2, a marketing firm on behalf of a pharmaceutical manufacturer, is conducting a marketing study, using telephone interviews with parents of young patients with precocious puberty, to learn of their (1) experiences and day-to-day issues in the treatment of precocious puberty for their children; (2) views on how the current treatment for precocious puberty could be improved; and (3) views regarding new materials for parents of children with precocious puberty.
To schedule a convenient day and time for the telephone interview, please call 1-888-798-1889. You will be asked several questions to confirm that you qualify to participate in the interview, which will take approximately 45 minutes.
For your participation we are offering an honorarium of $100. The interviews are confidential; and comply with the Code of Standards and Ethics for Survey Research and with HIPAA.
Gene, Brain and Behavior in Turner Syndrome (Children): Turner Girls ages 3-12 years with non-mosaic TS, Nationwide: Genetic factors, brain development and cognitive-behavioral functioning in TS. Participation will involve a 3-4 day evaluation that could include cognitive behavioral evaluation, brain imaging using magnetic resonance imaging (MRI, a non-invasive imaging procedure that does not use x-ray or radiation), and a simple blood test. Benefits of participating include free cognitive and behavioral assessment with a research report of assessment results that can be useful for educational planning, access to ongoing updates about the outcomes of the study, and a $150 honorarium. Travel arrangements will be made by research staff so that there will be no cost to families for participating.
Turner Girls ages 7-12 years: Stanford University Area Only: Cognitive intervention program on improving executive and visual-spatial skills. Participation will involve four weeks of cognitive intervention therapy including a home computer based practice one hour per day, five days per week, one parent training session to ensure effective at-home practice, weekly intervention training sessions under the direction of a licensed clinical neuropsychologist, and post-intervention cognitive evaluation and MRI scan. Benefits of participation include research-based intervention for executive function deficits and a report detailing the results of the neuropsychological evaluation that can be helpful in educational planning.
The studies are being conducted by The Center for Interdisciplinary Brain Sciences Research (CIBSR), Stanford University, http://spnl.stanford.edu. For more information, or to enroll in the study, send email to briad@stanford.edu; or, call toll free: 1-888-411-2672.
IGF-I Study: Recombinant Growth Factor-I (IGF-I) Study: Growth Failure in Noonan Syndrome (Children). The rationale for researching this particular therapy (recombinant human insulin-like growth factor-I (IGF-I), and one of its binding proteins, insulin growth factor binding protein-3 (IGFBP-3), is that it may bypass a problem that could adversely affect the response to growth hormone in children with Noonan syndrome. The study is being carried out to see if giving the study drug for one year will improve the growth of the study population. Children may qualify for the study if they:
- have been diagnosed with Noonan syndrome or are suspected of having Noonan syndrome
- are below a certain height
- are at least 2 years old and not yet in puberty
- are not currently being treated with recombinant human growth hormone
If you are interested in finding out more about our clinical study please visit www.insmed.com,or share this information with your physician.
Growth Hormone Market Research Study (Children) Market Research Survey. A medical market research survey by a UK based market research company is conducting a telephone survey amongst parents of children taking growth hormones. Questions will relate to satisfaction with growth hormones and unmet needs in this therapy area. The interview will be conducted over the phone and will last approx 30 minutes. Each participant will be offered $40 (cheque) to thank them for help and time. A donation will also be made to the Human Growth Foundation.
The survey is conducted for research purposes only -- no sales are involved and no medication will be used. All interviews are treated in complete confidentiality. The survey needs to be completed by the 10th May. If you would like more information or would like to register to take part, please email us, including the following information:
- please quote Project T6334-parents
- age(s) of your child/children taking growth hormones
- your time zone (we are calling from the UK)
- the growth hormone you are using currently (and in the past, if you have changed)
Please email these 2 addresses ASAP (before May the 10th, 2006): REF5085@fieldworkinternational.com AND jon.holder@fieldworkinternational.com. You may also call the following toll-free number and leave a message 1-866 382 3839 - Sophie Wintrich, Jon or Lucy (Project T6334 parents)
IGF-I Study: Recombinant Growth Factor-I (IGF-I) Study: Growth Failure Due to Primary IGF-I Deficiency (Primary IGFD) (Children): Research study of children with primary insulin-like growth factor-I deficiency (Primary IGFD). Primary IGFD is characterized by adequate growth hormone, low IGF-I, low growth velocity, and short stature. In primary IGFD, a cellular or genetic defect prevents the body from utilizing growth hormone to produce IGF-I. IGF-I is a principal hormone necessary for statural growth and development. Without IGF-I, the children's bones, cartilage, organs do not grow normally. Clinical trials are currently being conducted throughout the United States to determine the safety and efficacy of recombinant human IGF-1 in children with growth failure due to Primary IGFD.
If your child produces adequate growth hormone, has low IGF-I, but is not growing well, he or she may have Primary IGFD. If you are interested in participating in this study, please call Tercica's Clinical Trials toll-free number at 866-279-9886 to receive information about physicians participating in your area. Children who qualify will receive study medication, medical evaluations and all other study-related procedures at no cost.
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