Evidence map›Paper›PMID 35601643›Full record

ArticleTranslational science of rare diseases2022

The Rare Disease Research Scholars Program: A training curriculum for clinical researchers with mixed methods evaluation study.

Debra S Regier, Jennifer A Weaver, Nancy Cheng, Mark L Batshaw, Mary Ottolini, Michael E Shy, Marshall L Summar

Open access · diamondAbstract read
In one paragraph

Article in Translational science of rare diseases, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.3field-weighted citation impact, top 32% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 3 citations in OpenAlex.

  1. Article
  2. Article
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 4 institutions in 1 country.

Debra S RegierChildren's National Hospital, Washington, DC, USA.ORCID https://orcid.org/0000-0001-7525-0088
Jennifer A WeaverDepartment of Occupational Therapy, Colorado State University, Fort Collins, CO, USA.ORCID https://orcid.org/0000-0002-3964-1441
Nancy ChengChildren's National Hospital, Washington, DC, USA.
Mark L BatshawChildren's National Hospital, Washington, DC, USA.ORCID https://orcid.org/0000-0001-7557-0700
Mary OttoliniThe Barbara Bush Children's Hospital, Maine Medical Center, Portland, ME, USA.ORCID https://orcid.org/0000-0003-1199-4269
Michael E ShyCarver College of Medicine, University of Iowa, Iowa City, IA, USA.ORCID https://orcid.org/0000-0001-8460-6971
Marshall L SummarChildren's National Hospital, Washington, DC, USA.ORCID https://orcid.org/0000-0001-8920-0110
Children's National · USColorado State University · USMaine Medical Center · USUniversity of Iowa · US

Funding

Rare Diseases Clinical Research Scholar’s ProgramR25HD078229 · NICHD · CHILDREN'S RESEARCH INSTITUTE · PI REGIER, DEBRA S, SUMMAR, MARSHALL L · 2015 to 2020
$528k
NICHD NIH HHS R25 HD078229
6 · The paper itself

Abstract

Rare disease clinician investigators are essential to ensure appropriate diagnosis, care, and treatment for the rapidly growing rare disease population. As these researchers are spread across many specialties, learning the unique skill set for rare disease research (RDR) can be a hurdle and may hinder progress in the field. The need for an RDR focused training program for investigators in many specialties and backgrounds was identified in a needs assessment of trainees in the NIH funded Rare Diseases Clinical Research Network. Based on this information, the Rare Disease Research Scholars Program (RDRSP) was developed. We describe the needs assessment, curriculum creation, scholar recruitment, and outcome evaluation based on four years of programmatic data (2015-2019). This one year-long RDRSP uses a blended approach that includes in-person, web-based, synchronous and asynchronous learning. We evaluated the RDRSP using quantitative and qualitative approaches. Quantitative measures included pre and post questionnaires about knowledge, self-efficacy, and intent to remain in RDR. Data were analyzed using descriptive statistics and a paired

Indexed as

clinical researcheducationmedical educationRare disease

Identifiers

PMID35601643
PMCPMC9108859
OpenAlexW4200417341

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.