- Directors
- Mission
- Staffing
- Services
- Nexus Access Requirements
- Fees
Director: Cordelia Robinson, PhD, RN
Associate-Director: Gunter Scharer, MD, FACMG
Because of the special nature of the functions of the Nexus, a special 10-member Steering Committee oversees the development and operation of the Nexus. The Steering Committee represents the various user groups (programs, departments) and includes a patient representative and a biomedical ethics specialist.
Core Objective
The Translational Nexus (Nexus) is a database, patient registry and biological sample bank focused on pediatric neurological, cognitive and behavioral disorders (IDD). Its major goal is to advance research on neurodevelopmental disabilities (i) by linking human neurological, cognitive, behavioral phenotypes to biological samples, especially DNA, and (ii) by facilitating access to appropriate patient cohorts for clinical trials.
VIDEO: Translational Nexus core
Staffing
Core Experts: Scott Lucia, MD
Technical Personnel: Kathy Acha, MS
Research Coordinator: Sondra Rosendahl, MS
Services
Investigators: Please remember to acknowledge your Colorado IDDRC affiliation and your use of the cores in all your published papers. For an example see the For Investigators web page.
1. IDD Clinical Data Registry (Nexus CDR). The Registry follows a standard-of-care protocol to be used with all individuals who present for multidisciplinary evaluation services at one of the IDDRC participating clinics listed below. Partnering clinics invite all appropriate individuals who present for care to enroll in the Nexus Registry. Clinical data is collected from consenting individuals and entered into a secure electronic enrollment list.
Registry Entry Points
Developmental and Behavioral Pediatrics
JFK Partners
Pediatric Neurology
Pediatric Clinical Genetics
Inherited Metabolic Disease Clinic
Pediatric Special Care Clinic
Adult Medical Genetics
Assistive Technology Partners
Fragile X and X & Y Chromosomal Aneuploidies Clinic
Autism Treatment Network |
S. Friedman
C. Robinson, S. Hepburn
T. Benke
G. Scharer
R. Gallagher
E. Elias
M. Taylor
C. Bodine, P. Heyn
N. Tartaglia
A. Reynolds |
IDDRC investigators interested in data from the Nexus-CDR for their research proposals submit a data query request to the Nexus. Contact Cordelia Robinson at cordelia.robinson@ucdenver.edu or 303-724-7680.
Subject Population
| Autism Spectrum Disorder: 38%* |
| Down Syndrome: 20% |
| Dual Diagnoses: 21%** |
| Fragile X: 6% |
| Healthy Controls: 4% |
| Other Chromosomal Abnormalities: 15% |
| Other: 6% |
* Includes subjects from the Autism Treatment Network Nutrition Study.
**Includes subjects that have Autism Spectrum Disorder, Down Syndrome and Fragile X as their primary diagnosis so the total percentage will add to more than 100% due to the overlap of diagnoses.
Updated September 26, 2011
2. Nexus Biobank stores biological samples from individuals enrolled into the Nexus, and who consented to collection of a venous blood sample (for lymphoblast transformation and for serum), as well as a buccal smear or blood sample, for DNA extraction. Other biological samples, such as urine, may be collected. Biological samples are stored secure in the UCD-Biorepository Core Facility.
IDDRC investigators interested in accessing the biobank for their research proposal should submit a sample request to the Nexus. Please use the Core Management Tool to submit a sample request. Contact Gunter Scharer at scharer.gunter@tchden.org or 303-724-1571.
3. Clinical Study Design Assistance is available from the CCTSI. In addition expertise regarding study design recruitment and retention of individuals with IDD and their families as subjects is available from the Nexus Director (C. Robinson) and several of the JFK faculty, including Susan Hepburn and adjunct faculty member William MacLean. Contact Cordelia Robinson at cordelia.robinson@ucdenver.edu or 303-724-7680.
4. Biostatistics Support for IDDRC investigators is provided by Misoo Ellison, PhD (misoo.ellison@ucdenver.edu) . See Biostatistics and Informatics core for more information.
5. IRB Protocol Consulting and support is provided by the Nexus research coordinator (S. Rosendahl) and, when necessary, the Nexus co-director (G. Scharer). An Umbrella protocol covering policies and procedures of the Nexus has been approved by the COMIRB(08-1276). For more information about enrolling people into the Nexus contact Sondra Rosendahl at Sondra.Rosendahl@UCDenver.edu or 303-724-2349.
Nexus Access Requirements
If sufficient subjects and/or samples are available investigators must submit a brief application (approx. 1 page) to the Nexus Study Review Committee (SRC), which assesses merit, IDD relevance and potential overlap with ongoing studies. IDDRC Investigators interested in data from the Nexus Clinical Data Registry and/or samples from the Nexus Biobank for their research proposals are asked to submit a data query request to the Nexus using the Core Management Tool as well as provide the SRC with their Colorado Multiple Institutional Review Board (COMIRB) protocol. If sufficient subjects and/or samples are available and the Nexus Study Review Committee has approved access to the requested information, then the IDDRC investigator is given full access to de-identified information and/or samples. If PHI is desired, study subjects will be re-contacted and invited to consent into the IDDRC investigator's IRB-approved study.
Fees for Services (IDDRC investigators will qualify for significant discount upon renewal of IDDRC center grant):
Lymphoblast/Fibroblast Cell Line: $200
DNA from Lymphoblast (5 µg): $50
Genomic DNA (5 µg): $200
Plasma (100 µl): $80
Patient Access with PHI (each set): $200
Data Access without PHI (each set): $100